An Open Letter to My Loves

Dear Sierra and Bodie,

Can we just talk about how amazing you two are for a second?

I know, I know, every parent thinks their children are the most amazing thing since sliced bread. 

But seriously, you two are. 

You just are.

People often look at our life and tell me we've "made lemonade from lemons." 

But that's not entirely true.

Choosing joy amidst the ridiculous amount of bad things that have been sent our way is more like making lemonade from hand grenades.

(I know it doesn't make sense to you now. But it will some day. Trust me.)

You two have had to endure so much. Too much. 

Far too much for sweet souls at the tender age of 5 and 7 to have to go through.

- You have spent way too much time in hospitals.

- You have been picked up from school by someone you weren't expecting, because "your brother is back in the hospital," or "your daddy's not out of the hospital yet."

- You have watched your mom and dad cry over lost pregnancies, brothers and sisters you won't know until you get to Heaven someday.

- You have stood on the street and watched your home burn.

- You have lived in unfamiliar places, forced to realize that "home" is just where we are. Together. Home is us. 

- You have had your innocence stolen as you were told in hushed tones that "Daddy had a heart problem" and "He had to be rushed to the hospital" and "we don't know when mommy and daddy will be back."

- You don't get the luxury of youth, of believing you're invincible and that you'll live forever. Because you know too much. You've seen too much. More than most people can even begin to imagine.

Just too much.

You have every right to ask God "Why?" (I was just lamenting today about why He didn't pick our mission field to be the rich and famous, instead of bringing hope to the hopeless!). You have every right to stomp your feet and cry. Many adults in your shoes would. Many would throw a full out temper tantrum. 

And yet you don't. 

(Well at least not about your lot in life, anyway - about cleaning up your toys and doing homework, you throw the best of them. But I've never heard you ask WHY. Never.)

 

Instead, time and again...

- YOU CHOOSE JOY.

- YOU CHOOSE HAPPINESS.

- YOU CHOOSE TO WAIT FOR THE RAINBOW.

- YOU CHOOSE TO TRUST GOD.

And we could not be more grateful for that. 

I know Daddy and I are sometimes hard on you. 

Sometimes we don't give you the grace you deserve. Probably because we're not very good about giving ourselves that same grace. 

But we do it because we want you to know that, despite life's trials and tribulations, we must choose joy. We must choose to rise above. We must choose not to let the struggles define us. 

These trials; they are a part of our lives, but they are not us. 

You two are learning that. 

More importantly, you are teaching us that. 

You are teaching SO MANY people that. 

You two bring abundant joy and meaning to our lives. 

You are our reason WHY.

We are privileged to be your parents. And we want to make sure you always know that.

Love,

Mommy & Daddy

HOME

Dusk is HOME! Hallelujah! We're so grateful to have him back home with us. The first thing we did when we got home was go on a family walk (well, Dusk and Sierra went on a walk 

 while Bodie and I followed behind walking at a snail's pace while Bodie had to stop and look at every.stinking.thing. I finally gave up and threw him in the Ergo - 

 just in time to discover Dusk and Sierra and lapped us and were headed home. Ah well, at least we know for next time.

We survived the hospital stay. Dare I say, we even had fun???

Ok, perhaps "had fun" is too strong a term. Maybe "made the best of a pretty crappy situation" is a more apt description.

We're so grateful Dusk is home, but we're still processing a lot. The long and short of it is, structurally his heart looks fine (other than his questionable non-compaction), and Dusk's arrest is "known to happen" with CPVT, the genetic condition both he and Bodie have that predisposes them to an adrenaline (or exercise) induced tachycardia. It's scary stuff, folks. Bodie's and Dusk's Electrophysiologists already knew that. But I think Dusk and I really realized for the first time last weekend just how scary it is. 

We're wanting to scream from the mountaintops "OH MY GOODNESS! Do you realize what just happened?!? How do we prevent it from happening again?" And the EP's are rather nonchalantly saying "Well, duh. This is what happens with CPVT. Why do you think we put the defibrillator in Dusk 2 years ago? And why do you think we have been treating Bodie so aggressively? Dusk is pretty darn lucky to have made it this long without an event." So, this is no surprise to them. But it's putting it mildly to say it was a surprise to us. 

They started Dusk on a new med, Flecanide, which is known to very effectively treat CPVT. And, it has been very successful at keeping Bodie's (luckily much less catastrophic) episodes under control. With Bodie, it was clear it worked - he had a lot of tachycardia, we put him on Flecanide and the tachycardia subsided significantly. It not only reduced his risk considerably, but it just gave him a flat out better quality of life. With Dusk, it's a little more grey, since this is the only episode he's had in 30 years. So, if he goes another 30 years without an episode, it's hard to say it's because of the Flecanide - it may have been that his body wasn't going to have another episode anyway. But since it's known to decrease the risk, we have to try. 

So far, he seems to be tolerating it well, which is wonderful. In the midst of all of this (or maybe before? We only know it's a new thing), Dusk has also developed heart block. 

So we have lots to think about as Dusk recovers, including possibly changing out his ICD for a different one that will pace him more effectively, to hopefully get around the heart block. 

For now, Bodie's treatment remains unchanged. As you can imagine, we are concerned as to what this means for him, but since he was already being treated fairly aggressively to prevent an incidence just like this, his EP is comfortable that his risk is being adequately managed.

Please pray for us, as we move into this phase of recovery (Dusk is limited somewhat as to activity and exercise, and may have other limitations as well; we'll see as he recovers). We appreciate the prayers for Dusk, that his body continues to recover and that he has no further episodes. And pray for peace for him - all of this has been very mentally taxing, as you can imagine. And prayers for me - I'm just straight out overwhelmed and exhausted. I don't recall feeling this anxious and overwhelmed since right before Bodie's Fontan surgery. So appreciate prayers for peace for me. And prayers for peace for the kiddos - this has been a lot for them to take in. They seem to have rolled with the punches fairly well, but even so, it's hard to adjust to daddy suddenly being gone and in the hospital. Pray that they are able to trust God that they are protected through all of this. 

Thank you to those of you who have reached out, prayed for us, visited Dusk in the hospital, brought us food and taken such good care of the kiddos. Another blogpost coming soon just for you!!!

FIVE.

Today, you're 5 years old.

Yes, FIVE.

When they told us, when I was 17 weeks pregnant, that you would be born with half a heart, they only gave us survival statistics to five years.

 So, today, to have you defy all odds and embrace life so fully, and to turn 5.

 

 For once, I am speechless.

 (That doesn't happen often.)

So, today, I got nothing.

  Just happy tears and pride.

 Happy fifth birthday, our sweet boy. 

We could not love you more.

Love, mommy and daddy

All pictures are courtesy of the incomparable Brenda Munoz. Her work can be seen here. 

A Day of Hearts

So, in yet another rousing installment of "how much can the Bennett family take?" we learned yesterday that the answer is always "MORE!"

Yesterday, Dusk and I were both getting ready to be in his best friend's wedding (he, as the best man, and I, as a bridesmaid), and the kids were off playing elsewhere at the ceremony site…and then Dusk passed out and had a heart attack.

Yes. A heart attack.

On Valentine's Day.

Oh the irony.

Ok, well, not exactly a heart attack in the traditional sense of the heart failing due to poor function or something of that sort. But more in terms of an electrical malfunction that caused his heart to beat 300 beats per minute and then send him into cardiac arrest. His internal defibrillator kicked in, thank God, and ultimately shocked him twice before his heart settled down and he was able to come to.

It was awful. So, so, so scary. Dusk will tell you it was easily one of the most traumatic experiences of his life. The groomsmen, who witnessed it, will tell you, it was horribly scary. By the time they got me into the room, he was starting to come to, so I didn't see the worst of it. But it was damn scary nonetheless. 

Paramedics showed up and took Dusk to a nearby hospital where his ICD was interrogated and, in the words of the ER doc "these are scary, scary strips. Suffice it to say, you're damn lucky you had the ICD. Otherwise, we would't be talking right now. That ICD saved your life today."

Dusk spent last night in the hospital in San Diego, and they discharged him this afternoon so that we could bring him to USC (where his cardiac care is). So, we're here at USC now and awaiting word on what the plan is. What we do know is that his electrolytes are still out of balance (a result of the cardiac event and subsequent shock) and that his heart has been damaged (although we won't know the extent of the damage for some time or whether it's just temporary or permanent, we do know from his cardiac enzyme levels that some damage has occurred). But the bottom line is, they don't know exactly what happened, and they don't know why. So they want to get a really good look at his heart. 

The on-call cardiologist has ordered an echo, and is anticipating a cardiac catheterization as soon as they can get Dusk on the schedule. Maybe tomorrow, maybe later this week. 

So we could use some prayers. Please pray specifically that 

(1) They figure out why this happened;  

(2) they can prevent it from happening again; and

(3) Dusk can work through the emotional trauma of the whole experience.

Please also keep the kiddos in your prayers.  They, luckily, did not see it happen, but are affected by it. We literally had to leave them at the wedding with the bridal party when we raced to the hospital. 

Bodie keeps asking "Mommy, why did that have to happen to Daddy? I wish it didn't!" And tomorrow is Bodie's birthday, which just adds to the suckiness of the entire situation. 

And Sierra is noticeably worried, and is processing it in her own way, trying to find explanations so she can be confident it won't happen to her daddy again. 

Precious little souls who need comforting. 

And if you see the kids, please be cognizant of the words you're using (i.e. don't ask them "Hey, I heard your dad had a heart attack! Is he ok?"; please remember they're still processing all of this and trying to figure out what this means for them).

We are so grateful for your prayers through this. There is no question that God had his hand on Dusk, and our entire family, yesterday. Praise God for His continuous provision over us: for the fact that Dusk is alive; that it happened among adults who knew how to handle it, and not when he was alone with the kids, or driving. Please pray for His continued presence in this situation. 

You had me at "Vacation"

So, Dusk and I have been together like 100 years. 

Ok, maybe not that long, but awhile (we've been married almost 12 years and have been together almost 16 - I know, I know, I was clearly a child bride, but I digress…) 

Before we had kids, we used to go to Catalina and Baja, Mexico fairly regularly. They were two of our most favorite places to go. But, for a multitude of reasons (Bodie's medical issues, overall safety down in Baja, life getting in the way, blah, blah, blah), we've never taken the kids to either place. So, when my sister-in-law suggested an extended family Baja cruise, we were over the moon!

We took the cruise last week and the entire trip was  straight up, amazing. 

I was in awe for so much of it. 

In awe that we were really taking our kids to Catalina, to Mexico, to our favorite haunts. 

In awe that we were getting to spend so much quality time with my nieces and our in-laws (we hadn't seen our nieces in 3 years!!!). 

Mostly, in awe that we were just another family on vacation. 

It sounds silly, but that was probably the biggest surprise for me - I was sitting there out by the pool one afternoon with Bodie, stroking his hair in the sunshine over the Pacific, thinking "if you had told me, 5 years ago, when I was facing a deadly diagnosis, that I'd be doing this with a crazy little blonde boy, I'd wouldn't have believed you in a million years." 

Amazing.

God's grace a million times over.

We did Catalina, complete with the submarine trip. SO FUN!!!

(yeah, Bodie sorta liked it).

And we did Mexico.

And we did a whole lot of fun in between!!!

Bodie is officially 100% over the moon obsessed with his cousin Hannah.

 

(we're trying to decide whether they were actually siblings in another life - they look SO much alike!)

 And Uncle Paul isn't so bad either. 

(I love this pic, since Bodie looks exactly like Paul's baby pics - genetics is so fun!)

And Sierra and Amelia, with their matching missing front teeth were beyond adorable. 

It was so fun for the kids to get to spend so much time with their grandparents, Popo Alan and Grandma Jan.

We tried for a family pic. 

Really, we did.

Except that Dusk clearly thought "smile!" was loosely translated "give your best mug shot face." 

We wore red in Mexico for CHD Awareness Day! 

(if you wore red and haven't tagged me on Facebook or emailed me at amykbennett@gmail.com, it's not too late! Please send me your pics! And even if you forgot, just wear red today and pretend like it's the 6th - I won't tell anyone, don't worry!)

We had great fun at the dinners on the cruise!

We celebrated all 4 of the kids' birthdays on one night, since they're never together for their birthdays.

Bodie was pretty excited. 

All the kids got cash to spend in Mexico. So fun!

I love these pictures. Sierra and Amelia took these silver shells off the table and pretended to play telephone with them. 

Which of course caused a big huge fight when Bodie wanted them as well.

You can see him reaching for the shell in the top one. 

When he was unable to steal the shells, he and Hannah made do with the butter dishes.

It was adorable.

This was one of our waiters at dinner, Josico. Bodie LOVED him. 

So much so, in fact, that Bodie sobbed our last night on the ship, when he realized he wouldn't be seeing Josico anymore.

No really. He sobbed. 

Buried his face in my shoulder and friggin cried buckets.

If we know nothing else about Bodie, we know he's a lover.

I'll leave you with these two pics, which pretty much sum up, well, everything. 

If there ever was a way to spend CHD Awareness Week, it was this. Doing something we never thought possible, made possible by the incredible advances in CHD treatments. A vacation where Bodie's heart was just an afterthought. 

We were SO SO Blessed by this vacation. 

Thank you, so much, Popo Alan and Grandma Jan, for making the vacation possible for us - and Missy, for being the brainchild behind the whole thing!