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!

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. 

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. ♡♡