Friday, May 12, 2017

But mama, do these laps count?

Today was the kids' school's annual FUNDrun. 
You know the thing some genius came up with once, where all the kids in school run for hours on end (or maybe it just seems like it?) and people sponsor them and the school makes money. 

Great idea.
Unless your child happens to have endurance issues, in which case, it becomes a day fraught with emotion and worry, and yet another reminder to your child of just how different he is.

I have been so nervous all week leading up to today.

Do I tell Bodie to take it easy? 
I don't want him to push his already extremely taxed heart past what it can currently handle (which isn't very much, if I'm being honest).
But what if he CAN actually do more, and I sell him short by telling him ahead of time to be ok with just walking?

Cue the big emotional "girl, you are seriously overthinking this, just tell him to HAVE FUN" speech.

So that's what we did. I told him to have fun. And that I would be proud of him no matter how far he ran. And I expected him to run maybe 10 laps (the average for most of the kids is 90-100).

He ran 3 laps. And noticed how he was immediately lapped by every freaking kid there (and probably would have been lapped by their pre-walking toddler siblings if they were actually allowed to participate). My heart broke and I had to hide my eyes filling with tears as I saw him come around to take a break, his face defeated, and sit next to me to cuddle. All I could think was please, dear God, let this thing be over soon.

But then a wonderful thing happened. 
The crowds thinned a bit.
Some of the kids started walking.
And suddenly, Bodie wasn't the only one going slower. 

And this kid got back up and started walking.
And I'll be darned if he didn't do 70 laps. 70 freaking laps, people. 
I did a few with him, and piggy-backed him for a handful of laps. 

During those laps, he asked me over my shoulder "but mama, do these laps count?" 

Oh sweet boy, you have half a heart and that half a heart is so tired right now. You just did 60 laps. Yes, buddy, these laps you're riding on my back ABSOFREAKINGLUTELY count.

I could not be more proud of this kid. Of his tenacity. Of his brave attitude. Of his smile. Of his lousy freaking half a heart. 

I tried to catch a picture of him running, but I wasn't successful. I, did, however, catch this one.

And these two, with his closest buddies before and after the race.
And one with this girl. 
Who, in her own right, made me incredibly proud. She ran over 100 laps. But she didn't do it in a race to run the most laps (she wasn't even close). She did it by holding hands with the younger kids, and checking to make sure they were ok and getting their laps crossed off. She got what it was all about.
 I love this boy. And I love his sister. 
Every day, they continue to teach me what life is about. 
And about how every lap counts.
Every.single.one.
Even the ones where you need a lift from someone who loves you. 
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Sunday, May 7, 2017

TEN.

Our sweet Sierra,

DOUBLE DIGITS.

DOUBLE FREAKING DIGITS.
I am still trying to figure out exactly how that happened.

As a 3-year old, when I told you were growing up too fast, you put your chubby little hands on my cheeks and said "Don't worry, mama. I'll grow down." Somewhere along the way, you seem to have forgotten that promise. 
But I digress.

Double digits it is. 
Sweetheart, we are so proud of you. 
Of this amazing young woman you are growing into. 

If we thought the first decade of your life was full of insane and exciting adventures, it kind of seems like it has nothing on the next decade. During the next 10 years of your life, you'll learn to drive a car, pick a college, move out (gulp!) and, most importantly, figure out who YOU want to be. And maybe even find your spouse (but let's be clear here - we're cool with you meeting him in the next decade, but not so much actually marrying him during that time - after college, honey!!!).

As you head into what are sure to be tumultuous years (for all of us!), the best piece of advice I can give you is to BE YOU. It seems easy now, but soon, it won't be. Soon, the pull to be like everyone else will be so so SO strong. But dig in deeper than the temptations, the forces pulling you away.

Just do YOU. 
The you that God made you to be.

The silly sweet girl who notices everything and isn't afraid of any new experience.
The girl who this little dude absolutely adores (well, except when he's scratching and biting you).
The girl who has an army of peeps who love her dearly.
The girl who loves dolls 
(yes, still at 10. I know I get frustrated sometimes, but then I have to check myself, and realize that there are MUCH worse things you could be playing with than dolls at 10. Between you and me, if you want to do every one of your next 5 birthday parties at the American Girl Doll store again, I am so OK with that).

 So sweetheart, as you enter this next decade, just DO YOU.
Because the you that you are is this joyful and messy and wild and crazy girl, because she embraces life.
And she is unlike anything the world has seen yet. 

Happy 10th birthday, sweet girl! We love you! 
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Thursday, April 20, 2017

I will not take these things for granted

There is a song in the early 90's by the band Toad the Wet Sprocket called "I Will Not Take These Things for Granted." It's an incredible song, and it was sort of the soundtrack to my late high school and early college years. (As an aside, urban legend has it that it's written about someone in jail, so maybe not the best life song, but whatever, I was a teenager, so it therefore meant whatever I thought it meant personally to me, because, you know, I knew everything...) 

In any case, it has been on my mind all day today.

Here is why.

Facebook reminded me this morning that 7 years ago today, we almost lost Bodie. This was my post at 11:07pm that night...

"Bodie has had an extremely difficult evening. He may not make it through the night. Please, please, please pray for a miracle for our sweet boy!!!"

That night seems so long ago. A night I wouldn't wish on anyone. Bodie has given us a lot of scares in his short life, but that night probably tops the list. We were so so close to losing him. Code meds were drawn, we were told to consider calling family. We honestly didn't know if he would make it through the night. 

And yet he did. 
God saw fit to protect our son that night.
And in so many nights since.

I know our scary moments are far from over. 
Bodie is in full blown heart failure. There is no easy path forward. I know the path will include more scary moments. 

But today, I didn't want to think about those. 

Instead I chose to focus on the sweet boy in front of me, jumping in and out of the pool, laughing hysterically and grinning ear to ear.
The boy who proudly stood on this raft in the middle of the pool for 5 and 1/2 minutes (no easy feat for a kid whose abdominals have been cut into on multiple occasions). 
The boy who loves with wild abandon and just spent 10 minutes hugging and kissing me "just because, mama."
I do not take these moments for granted. 
Not one single moment.
These moments were never guaranteed. 
Not for Bodie.
Not for us.
Today, we are unspeakably grateful for this boy and our moments with him. 
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Thursday, April 13, 2017

Rhythm is gonna get you

This dude.
He had an appointment with his electrophysiologist (his pacemaker and rhythm doctor) this morning. Overall, the appointment went fine. His BNP (measure of heart failure) is continuing to drop (from 230 a month ago down to 180), which is great - it means his current med cocktail is working well for him.

He's riding his pacer a bit more, which is good to see (ideally, we would want him riding his pacer 100% of the time - he's at about 17%, and is tachycardic the rest of the time). However, his resting heart rate is just too high (averaging in the 130s, and NOT in sinus rhythm). This is bad for him both because it's not good for his function, and because higher rates can predispose him to arythmias. So, his EP is re-starting a low dose cardiac specific beta blocker.

When I mentioned being concerned about restarting beta blockers since that's what started this whole heart failure mess, his EP looked at me like I had 2 heads. And then went on to tell me that he does NOT believe the beta blockers caused all of this, but that it is likely a manifestation of his underlying heart disease (not his HLHS - the CPVT (rhythm disorder he inherited from Dusk), which is similar to non-compaction, in that it can cause cardiomyopathy at any time). I did not know until today that was his theory on that had happened (we thought it had all been attributed to beta blockers and his last surgery). 

No one has a crystal ball. And no one can go back in time to see what exactly caused Bodie to go into such severe heart failure. So we don't know.

But, if his doctor is right, that means 2 things - 1) his heart is unlikely to recover. and 2) the heart failure is likely to progress. No one knows at what rate. Or whether it will. But it could.

We know his current heart is subject to a whole lot of rhythm issues. We know those are likely to get worse as he gets older. We know they are likely to get worse if his function worsens. We know it is incredibly likely transplant is much, much sooner than we had thought. Most importantly, ALL of Bodie's rhythm issues are housed in the conduction of his current heart. That means, when this heart is replaced with a new heart, he will have NONE of these rhythm issues anymore. None. (He may have other rhythm issues, but none of these crazy complex chd rhythm issues he currently has.) At some point, it just makes more sense to stop trying to get this heart to limp along and get him a new, healthy heart.

If only it were that easy. 

If only transplanted organs could be guaranteed to come right when you need them. If only transplants came with a 100% success rate, instead of a list of potential side effects and complications that would keep you up at night. 

That said, we are walking a fine line of deciding when to evaluate him and list him for transplant. 

When the risks of keeping his current heart are higher than the risks of getting a new heart, but when he is still healthy enough to do well with a transplant and wait for a heart. That's when we evaluate and list him. But when is that? Again, that crystal ball would sure come in handy right now.

For now, we're taking it day by day. 

We are sending his records to UCLA and Stanford to get their take on the situation and what they recommend and will be talking to CHLA about their recommendations in early June. 

Unfortunately, as with everything Bodie does, his journey to transplant will not be the easy one. His labs show that he is highly sensitized, which means his odds of rejecting a new heart are high. Some centers will not even transplant highly sensitized kids. We don't know how highly sensitized Bodie is yet (mostly because I don't have a clue how to read the report!), and whether that would prevent any of the centers we're looking at from listing him, but that is a possibility. Thank God, there are therapies some hospitals use now to bring down antibodies. They're not fun and they're not easy, but if they make the difference between being a transplant candidate and not, then they are worth it. Stanford happens to be on the cutting edge of some of those therapies, which is part of why we are sending his records there.

The best thing you can do for us now is to pray. 

Pray for Bodie, who is currently doing well symptom wise. He is happy, he has tons of energy and he continues to eat us out of house and home. His body is compensating very well, which makes all of this easier. Please pray that his body continues to compensate. Please pray that we can get his antibody issues handled so that he can be a good transplant candidate.
Pray for Sierra, who knows some, but not all, of this. She loves her brother and she worries about him (we have shielded her from the major worries we have, but even so, she gets that transplant is not an easy path).

Pray for Dusk and I, for wisdom in choosing the path forward, and the timing of everything. We know God has a plan in all of this, but it is sometimes hard to see through the fog to see what His timing is. Pray for peace in our decisions, and pray for community to come alongside us if we end up needing to travel for care. Splitting a family up so that one child can get the care they need is not an easy decision. It is not one that will be taken lightly. But it is a decision we may ultimately have to make. We don't know. And the uncertainty is hard. Pray for peace through all the uncertainty. 
We covet your prayers.

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Monday, March 20, 2017

It will get better

The evening of March 8, 2014, our home looked like this. 
As we hit the anniversary of our fire, I read back through my blogposts from the night of the fire and the weeks following. It was honestly so hard to read those posts, to be brought back to that night, to the shock and the fear, to the days afterward. So much I had forgotten. 

On March 8, 2017, a family in our local community lost their home to a house fire. A family with 2 little boys and a dog. A family who never saw it coming. A family who is now living in a hotel and trying to find a rental home, with estimates that it will take a year to rebuild their home.

I don't know this family personally yet. But our local community is so amazing, and I have seen Facebook posts and emails and meal chains about and for this family. I have watched our local moms come alongside this family and support this family as they face the unthinkable.

I wanted to share some words with this family, and to any family going through something similar.

IT WILL GET BETTER. 
I promise.

Right now you are overwhelmed. 
Your life has changed on an axis and will never, ever, EVER be the same.
It's ok to grieve that.

It's ok to walk through what remains of your house and think "Oh.my.gosh. My house looks like I live in a war torn country. How did I NOT realize this is what a house looks like after a fire?"

It's ok to hate the smell of burned plastic and ash that inhabits your house. It's ok to have every sad emotion in your body triggered by that smell for a very long time. It's ok to hate crossing the threshold into your home because that is all you will smell. 

It's ok to suddenly realize you have lost something irreplaceable (for us, it was our entire ornament collection, both the ones my husband and I made as children, and the ones our sweet kids made for us in preschool). It's ok to suddenly feel an enormous loss and pain over that. It's ok to cry buckets over this. Actually, it's ok to cry buckets over every single facet of this experience. It sucks. There's sort of no getting around that. 

It's ok to stand in what was your bedroom and cry, thinking "How on earth can I possibly try to categorize what was here and what is salvageable or not?" 

It's ok to survey your house, speechless, the house where your children may have been brought home from the hospital, and learned to walk and talk and eat that first birthday cake - and to know that it will never, ever, be the same.

It is ok to be overwhelmed and to grieve.

But it will get better. I know it doesn't seem like it, but it will.

There will be a time when your house is rebuilt and it becomes your HOME again, where you will again see it as a safe sanctuary. (Just fyi, it won't be right away. I distinctly remember our first night back in our rebuilt home, turning to my husband and saying "I have this fear the house is going to burn down tonight." I expected him to say "you don't need to worry, it won't." Instead, he said "yeah, I have the same fear." That was, shall we say, super not at all helpful.) But, it WILL happen. The time will come where it's NOT the first thing on your mind when you walk in the front door - or the second or the third - or even on the list at all.

There will be a time where the burned plastic smell will be just a distant memory (seriously!)

There will be a time where your friends will come alongside you and create NEW precious family heirlooms (for us, it was when my inlaws had my kids make new Christmas ornaments for us - and when other friends sent us ornaments for our tree that first Christmas after the fire).

There will be a time when you will finally, blessedly, be DONE with inventorying all of your belongings. And you will realize that, at the end of the day, it was just STUFF. You are safe. Your children are safe. That is all that matters.

There will be a time when the days you spent in the hotel, and the rental home, will be fun memories. Right now they are stressful and you wonder if you are somehow ruining your children's childhood (because, unfortunately, no one has written a book on "How to make it fun and not traumatic for your kids when your house burns down suddenly").

But the times you're spending now and in the near future - in a hotel and a rental home - they will be a time of bonding and your kids will have such great memories. My children still talk of when we got to stay at the Embassy Suites and swim in the pool every night - and all the fun we had in the rental house. 
(This was at the hotel, 3 nights after the fire.)

Right now, this seems like the most critical thing that will ever happen to you. And right now, it is. But there will come a day when it will just be a part of the fabric of your children's childhood, that makes them stronger and more resilient. I know this for a fact. I have already seen this with my kids. And we're only 3 years out.
(My kids now - resilient and happy).
It will get better. I promise. 

You're in the super sucky part right now and I'm so so sorry for that. Just keep pushing through. 

Lean on your friends and family. And the kindness of strangers. Even if you're not good at asking for or receiving help (preaching to the choir here), you NEED it right now. It's ok to take the help. 

Finally, if you're blessed enough to have a relationship with Jesus Christ, lean deep into that relationship. It will sustain you in a way that nothing on earth can. And if you don't, get to church and get going on that one. :-)

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Friday, March 10, 2017

Taking the good where we can find it

Bodie had an appointment with the heart failure team today. 
(It had been rescheduled twice due to the plague that hit our house, but everyone is finally well now (thank God!), so we were finally able to get in today).

The good news is that his BNP, or measure of heart inflammation, has continued to drop, from 285 in mid-January down to 230 today! This is very good news and means that his current cocktail of meds is effectively taking enough workload off of his heart so that it isn't as stressed from the dysfunction. 

Unfortunately, his heart function just has not improved. At all. We were very hopeful that it would. But, at the end of the day, it just hasn't. 

So what does this mean for Bodie? 
Despite his severe dysfunction on echo, he looks pretty good all things considered. I mean, he doesn't look good compared to kid with a perfectly healthy heart and good heart function - he's not running any marathons or anything. But for a kid with severe heart failure, he looks pretty darn good. His energy is good, he is eating well, he grew a bit and he's enjoying life. He's in school, and, on his good days, he's really not that symptomatic. There are a lot of days where you wouldn't even know.

But, on his bad days, it's very hard to keep sight of how good he looks on his good days. For Bodie, his heart failure shows up almost entirely in GI symptoms. On his bad days, he wakes up nauseas, and sometimes throws up mid-morning (usually at school, unfortunately - yay for Bodie, who now gets to be that kid who barfs at school - as if he hasn't been dealt an unfair hand enough already). He usually perks up later in the day and is fine by evening. But the bad days are hard to predict and often leave him sad. And some days we can make it 2 weeks before he has a bad day. And other weeks, he'll have 2 bad days just a few days apart.  It's frustrating for Bodie and heartbreaking for us. 

He cannot sustain this up and down indefinitely. Honestly, it's working for now, but it's no way for a 7 year old to live life. We tell Bodie all the time that this season won't last forever - either his heart will recover - or it won't, and he'll get a new one that will work much better for him. That said, he's currently stable enough that the heart failure doctor is comfortable waiting 3 months to see us again (a 3 month pass is pretty fantastic for a kid in severe heart failure!). If his heart function still has not started to rebound by then, then it's likely we'll having the transplant discussion. 

This does not mean he will be listed for a heart in 3 months. What it means is that we will have a discussion about evaluating him for transplant in 3 months. If, based on where he looks in 3 months, we decide to proceed with that, THEN we will start the transplant evaluation process at that time. The process itself takes some time. Even then, the decision may be to hold off on listing him if he otherwise looks ok and is compensating well. Or, the evaluation may reveal that he really needs to be listed ASAP. We don't know at this juncture. So, transplant, while still on the table, is still a bit off for Bodie - as of right now, at least.  

But all of that is a conversation for another day. We covet your prayers that that day is a bit further off even than it seems right now. Your prayers have brought our boy this far and we know God has the ability to heal and we covet your prayers that He will continue to heal our sweet boy. 

Today was a good day. Bodie is having a GREAT day symptom wise and his appointment was good. His function has not gotten any worse and his bloodwork continues to improve.  He got back to school in time to enjoy his school's annual Game Day with his classmates and is having a playdate this afternoon with one of his best friends. In a life of constant fluctuations with his health, we will take days like today any day. And pray for many, many more of them.

I will leave you with this. 
In case you're wondering what brave looks like, here it is. After a blood draw, ekg, echo and consult with the heart failure doctor, he brushed it off and headed back to school and into Game Day with a huge smile and dressed in orange just like every other kid in his class. 

Today was a good day indeed. 
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Friday, March 3, 2017

Sick little dude

We have one sick little boy on our hands right now.

Some nasty bug has hit his 1st and 2nd grade class and taken down all but 2 of the kids (at latest count, at least). And it took them all down within 4 days. Crazy.


He has been out of school since Tuesday, with a fever and coughing, and some congestion.

By all accounts, although it's hanging on, it's not the worst virus in the world. Manageable symptoms - for a healthy kid. He's tolerating it well, thankfully. 

Tuesday night, his heartrate was running in the 160s and his sats were in the high 80s (both NOT good for any kid, let alone ours), but we managed to eek it out at home and haven't seen anything that drastic since then. His heartrate is a little high, but his oxygen saturations seem to be holding steady, for the most part. He doesn't have labored breathing, he's not retracting. He's just uncomfortable and tired, and we're managing it with Motrin and Tylenol. He still has an appetite, so continues to eat well. He seems to be managing it like every other kid in his class. Up and down, but really just making him a little more tired and cranky. He's been watching movies, doing puzzles and building Legos. Like any typical sick 7-year old.

Except that he's not.
He has half a heart.
And his function is severely depressed.

I cannot stress enough how lucky we are to be able to manage this at home.
Many of our friends don't know this, but most kids with the degree of heart dysfunction he has end up inpatient for every virus, particularly if they're respiratory in nature. 
So this virus has me on edge.

Bodie has always had a robust immune system. 
When he was 4 months old in the hospital recovering from both c-diff and MRSA in his bloodstream at the same time, the cardiac team consulted immunology. The immunologist walked in and said "I'm happy to test this kid. But bottom line, a Norwood single ventricle infant who is still alive after battling both MRSA and c-diff at the same time clearly does not have any issues with his immune system."

And that doctor was right. 
Although Bodie has caught a lot of bugs over the years (particularly when his oxygen saturations were lower, making it harder for his body to fight stuff off in general), he never had to be hospitalized for viruses or bacterial infections. He just kinda powers through them. We have been exceedingly blessed.

But heart failure changes the picture.
When Bodie was diagnosed with heart failure in early December, the doctor told us "this cold and flu season will tell us how soon he needs to be listed for transplant. If he is inpatient every time he gets sick, then his body will clearly be telling us that it's time." I am pretty sure, based on the condition of his heart, she expected him to be inpatient most of cold and flu season.

And yet, he is holding strong at home. 
We are so blessed.
If it takes him a couple more days than his peers to get past this, then I will consider it an incredible blessing.

But the more prolonged the virus is, the greater the likelihood that his heart will grow tired and we'll end up needing to take him to the hospital.

So please pray for our little dude. 
Pray that we're nearing the end of the virus, and that we can get back to life as normal (well, life as normal as it is with a half a heart that's not functioning too well.)

We were supposed to see the heart failure team this week, but rescheduled due to Bodie being sick. We aren't interested in bringing his germs into the cardiology clinic, particularly to the heart failure team, who deal with kids in heart failure (who can't handle viruses due to weakened heart function) and transplant kiddos (who can't handle viruses due to immune systems wiped out to prevent rejection of their new hearts). They have tentatively rescheduled us for next week. Please pray Bodie is well enough to go and that we get good news.


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Wednesday, February 22, 2017

Birthday blessings

This morning, Dusk and I were lamenting how tough things have been lately, with this never ending lawsuit and our refrigerator that decided it's not working again. And then, like God always does, he nudged me a bit via a Facebook reminder of what was happening 7 years ago at that exact time in the morning. We were sending our 6 day old son back for his first open-heart surgery.

Ok, God, I got it. 
This, everything else we're dealing with, it's the small stuff (well, except for the health stuff - there's nothing small about the health issues Dusk and Bodie are facing). But everything else is annoying and overwhelming at times, but still just little stuff. 

And that seemed like the perfect time to share some pics of Bodie's birthday party this weekend. 
Bodie picked a skateboarding theme. I did my best, but the kid gave me a run for my money this time. But we played "pin the wheel on the skateboard" and had skateboarding coloring pages and mini-ramps for the kids to decorate. So I think I earned at least a little mom cred on this one.


But really the coolest part of the party was the cake. I'm not gonna lie.
The cake was phenomenal.

We went through Icing Smiles again, an incredible nonprofit organization that works with bakers across the country to provide birthday cakes completely free of charge to families impacted by the critical illness of a child. So we asked for a skateboarding cake and boy, did they deliver.

Look at this cake!
Amazing. 

And SO SO good. 
Bodie was not the only one who couldn't get enough of it (and I may or may not be eating leftovers every night after the kids are in bed!)

Here's the coolest part. 
Icing Smiles works with a network of bakers. 
So you give them your request and they put out the call to the bakers in your region, asking if anyone is available to do a cake with a particular theme on a particular date. And you get whatever baker is available. 
Well, the baker this time was the EXACT same baker who did Bodie's cake the last time we used Icing Smiles (when she made an amazing minion cake for his 4th birthday)!!! It was so wonderful to have the same baker, and to give her a hug and for her to see how much Bodie has grown. 

I cannot tell you how much I cherish this:
AND she even brought a set of books for Sierra!!! 
I know, amazing, right?!?
Christine is truly an angel - I kind of feel like she's our personal sugar angel!!! 
If you'd like to give Christine some love (and seriously, you should - she is an incredible human being), you can check out her Facebook page here

Anyway, the party was so fun. A wonderful celebration of our sweet, brave boy. With 20 kids running through our tiny little house, it was a bit chaotic (and it took my introverted self 2 days to fully recover!), but so worth it. Kids were running around and chasing each other and having so much fun. 
Bodie didn't hate having the girls fighting over who got to sit next to him. 

And Grandma Jan and Popo Alan even flew out for the celebration and got to stay a couple of extra days, which proved to be icing on the cake for us!
I'll leave you with one final picture. Because I think it encapsulates who our son is.
In case you're wondering what hope looks like, this is it. Half a heart, currently in heart failure, running around barefoot, clobbering a pinata at his 7th birthday party. If this picture doesn't capture this kid's indomnitable spirit, I don't know what does.Photobucket

Thursday, February 16, 2017

The Big 7

To our sweet Bodie,
Happy Birthday! 
I cannot believe you're 7 - how is that even possible??? 
(I know you refuse to accept that you turned 7 today, and are insisting that you are 6 until your party on Saturday, but since I was actually there the day you were born, I'm gonna go with my recollection on the date.)

I know this wasn't the best day for you.
I know that CHD doesn't take a break just because it's your birthday, that heart failure doesn't look for a "good date" on your schedule to rear its lovely head and throw symptoms your way. 
I know you put a brave face on it and muddled through a long school day even though you were tired and nauseas and thought you might throw up.

I know all of that.
It's unfair and it sucks.

But here's the really important part that your daddy and I want you to know.

You are amazing, kiddo.
You really are.
I know every parent thinks that, but honestly, there is just something special about you.
When I was 17 weeks pregnant and Dr. Kim told me you would be born with half a heart, we realized we weren't promised any birthdays with you. And yet, we've already celebrated 7! 7!! And here you are, currently sitting in a rough patch, but thriving nonetheless. 

You're doing all these things a "regular" 7-year old kid would do. You're reading (you really really are! It's slow, but it's there and we couldn't be prouder!). You're building Legos allllll the time. You love art and Star Wars and Dr. Seuss Books. You are obsessed with MacGuyver (ok, maybe that's not a typical 7-year old thing - you can blame that on a dad who grew up in the 80s. We'd like to think you're learning good survival skills by watching it with dad). You're thisclose to testing for your next belt test in karate (and usually grumble about having to go - like any other 7 year old). But you are NOT a typical 7 year old. You have been so so much in your life - and yet, are such a typical kid. I know you don't get how incredible that is - and that's ok. It's probably better that you don't. 

But you should know, you are funny. So so funny. And you have this amazing, magnetic personality. Kids your own age may not necessarily be drawn to you, but it makes them put up with your shenanigans, which is pretty darn helpful for getting through childhood. But kids younger and older, and especially adults, are totally drawn to you. People are often telling me how much they love talking to you, how funny and sweet your stories are. That is God's gift to you - and to us, really. He has given you this sweet, engaging personality. So the physical body he gave you might not be all it's cracked up to be. But there's a lot more to life than having a good physical exterior. That part just gets old anyway. But what's on the inside - the sweet, funny, tenacious personality - that's there to stay, buddy. And that's an incredible gift to have.
And your love for life blows us all away. You have been through so stinking much, and yet still have a smile on your face and silly laughter in your voice. That is a gift. Tonight, as you were eating KFC and Rice a Roni for dinner in your underwear (you're welcome for not sharing that pic, buddy - also, I don't want CPS to take you away because I posted a pic of you in your underwear, so there's that), I was just marveling at you. At your insightful questions. At your idea to run around the table and have everyone give you 7 hugs. At you recounting all the kids at recess following you around as you ran around in your new eagle wings (by the way, buddy, I was thisclose to not buying those for you - clearly getting them was a good call, so thank you for the constant begging me to get them for you). 

You, my sweet boy, are a gift.
In so many, many ways.
Please don't ever lose sight of that fact.
God is going to do amazing things with you.
He's already doing them. 
He's already done so much in 7 short years.
We don't know the path that will get us from 7 to 8. But we pray it will just be the first of many of the next 77 years with you.
We love you, buddy. To the moon and back a million bajillion quadrillion times.
And then some.
Happy Birthday, big guy. 
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Saturday, February 11, 2017

CHD Awareness Week - and a way to help us!

Congenital Heart Defect awareness week runs February 7-14. 
Which means we're right in the middle of it. 
I've been fairly quiet this year during CHD Awareness week, and I had an opportunity to share in a piece for The Mighty about why. You can see that post here
(I write from time to time for The Mighty, a disease and disability community - I typically write about CHD, but occasionally branch out to ADHD and other topics as well.) 
Please take a moment to read this and share with others. 

Additionally, many of you have asked how you can tangibly help us. 
In December, two of my fellow heart moms came alongside me and asked how they could help. They suggested a GoFundMe account and I said no. I kept thinking things would get better, that the pressures would diminish, that we wouldn't need help. So we opted instead for the GrubHub and Target "gift card train," which has been so so helpful! But here we are 2 months later and as you know from my last blogpost, if anything, we're under more pressure than before. So when my dear friends Lillian and Shannon asked me again recently, I relented. We're not good at asking for help. We would so so much rather be on the giving than the receiving end. But if God is teaching us anything in this time of trial, it is that we need to say yes - to prayers and to offers of help. We are learning.

So, please pray for our family, and, if you are so led, contribute to alleviating some of the pressures we are facing. You can find the link to our gofund me account hereBennett Family

We are so profoundly grateful for your love and support. ♡♡
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