Sunday, July 8, 2012

There is HOPE...part 2

If my last post was directed at parents finding themselves trying to vacation for the first time with multiple kiddos, this post is directed at parents finding themselves facing a new diagnosis of HLHS. When we received our diagnosis almost 2 years ago (wow, can't believe it's been that long), Dusk and I grieved for the loss of the life we had envisioned for ourselves, for our children. It's just kind of what every parent goes through as you face a diagnosis of a special needs or medically fragile child. I think every parent has something they hold onto, that kind of represents their "before" life, the life they lived before they received the diagnosis. For Dusk and I, we held onto Tahoe, the place where Dusk had vacationed as a child and we had taken Sierra as a toddler. When we received our diagnosis, we figured our dreams of family vacationing in Tahoe were just a part of our "before" life. Like everything else, we would adjust. But that didn't mean we weren't sad about it. We knew the likelihood of taking a child with a half a working heart to a high elevation was probably pretty slim. But we still held hope - an outside hope that maybe our unborn child would fight this HLHS thing with all he or she had, and that maybe, just maybe, we would make it up to Tahoe someday.

So, when we made it up to Tahoe last year, with oxygen tanks, a pulse ox machine, and nerves all in tow, it was amazing and incredible, a true dream coming true. We tried to take advantage of every moment (even the trying ones - which, as it turned out, were most of them), knowing that there was a good chance we wouldn't make it back up this summer, being that we'd either be too close before Bodie's Fontan that his sats wouldn't be high enough, or we'd be too close post-op to push him at elevation. So what an absolutely mindblowing experience it was for us to be back up at Tahoe again this summer, having even more fun than we did last summer. What a ride it was. And perhaps made even more amazing just in knowing what a miracle it was to have gotten there at all, and in knowing each year we spend there might be our last. So we make every moment count.

So, to newly diagnosed parents, I offer you HOPE. Every child's journey is different and the fact that we've made it to Tahoe 2 years in a row doesn't mean every child will. But hold onto whatever dream you have for your child and your family. Because you just never know what God has in store for these special kids we're privileged to parent. No matter how long we get to parent them for, they're special and they're incredible gifts.

What I can say unequivocally is that, the day we received our initial diagnosis, or the better part of 5 months we spent by Bodie's bedside in the hospital, worrying whether he would make it another day, we never in our wildest dreams imagined we'd be up at Lake Tahoe 2 years later.

And yet, there we were, seeing a lot of dreams come true...

We played in a park at 6,000ft

We went on a hike at 8,500ft (this was SUCH a dream of ours, I can't even tell you)
...and apparently, my kids interpreted "Say cheese" as "strike the most ridiculous pose you can"

We took the kids to Circus Circus, where apparently they weren't as bothered as we were by the fact that the "acrobats" were a couple of way-too-old-to-be-in-spandex jugglers...

We got to spend SO MUCH time with grandparents who live 8+ hours away. The first 2 times they met Bodie, he was inpatient, literally fighting for his life. The third time, he was recovering from his 3rd major open-heart surgery. Being able to spend time with them outside of any hospital setting is NOT something we take lightly. 

We got so dirty we got to take a bath in a bucket in Popo's garage.

We got to go out with Gram Jan and Popo Alan to eat at my favorite - a casino buffet (hey, we all have things weren't not proud of - my love affair with casino buffets happens to be one of mine...)
(yep, Bodie definitely was blue at times during this trip - but in all fairness, he had just eaten ice cream)...

And finally, we got to take pic of each of their kids with their namesakes...
(Ok, we didn't really name Sierra after the road the Circus Circus was built on, but it was a cool pic)...

But we did really name Bodie after the town...
And I LOVE how they're both pointing at the sign...

So, to families facing a new HLHS diagnosis, what I can say to you is yes, grieve you must, because your life will be very different than you imagined. But, when you're done grieving, take heart, and have HOPE. Dream big. Because our amazing kids deserve nothing less than our greatest dreams for them.


  1. I have loved your last 2 posts. thank you! :-)

  2. Sometimes it can be far too easy to forget about hope and dreaming big--always good to have a reminder!