Echo of Hope

***Note: It’s Congenital Heart Defect Awareness Week. Please like and share with reckless abandon! It’s more important than ever right now. Keep reading to find out why.***

A little while back I saw an old friend post on Facebook, “I’ve changed my last diaper!” The youngest of his three girls had finally gotten the hang of the potty.

For him, gone were the thousand-wipe-a-day, 5 outfit switching, blow-out riddled trips to the mall. Gone were the days of spoon feeding stage 1 purees to the bib, the floor, his sweaters…pretty much to everything but the kid’s elusive pie hole. And, gone were the days of complete reliance on parents for dressing, eating, getting up and down the stairs, and the seemingly endless changing of the attached-with-stickies personalized disposable bum-hugging potties.

Seemingly endless, until, you know, it ended.

As one chapter closed, another was certainly opening. Days of school, soccer, ballet, and karate brightened on the horizon. Soon the kids would be playing by themselves, no longer in need of constant, watchful eyes, 24/7 attended care. Must be something about the self-wiping and flushing that urges all this new development to emerge.

On his Facebook post, there were lots of “Yays!” and “Congrats!” and “Time to sell my stock in Pampers.” One fellow parent said simply, “I can’t wait. I never want to change another diaper.”

I don’t get it.

Yeah, I know, I’m the dad. I’m supposed to find a convenient excuse to do something in the garage right as the used-to-be-puree bouquet starts wafting across the room. Okay, so here and there I might.

But I hope the diapers never end. I want some things to stay the same forever:

– Wake ups from nap time wailing…you’d think the world is about to end. Once you walk into the room, you can hear the screeching-to-a-halt sound when baby looks you in the eye, recognizes you are there, and thinks the world suddenly became stable and safe again. Smiles purest of the pure.

– I don’t want to go outside with the basketball and shoot some hoops. I want “Bah-kee-ball! Hooooop!” and “Ari shoot HIIGGHH!” And I never want to stop doing “Monkey Slam!” and “Elmo Slam!” and “Kane-gee-roo SLAM!” because the squealing in delight after each shot is sure to slip away.

– I don’t want to see hip hop lessons take hold and be regaled with popping, windmills, and head spins. I want them to keep dancing like Elaine – all self-confident and herky jerky – thinking they’re ready for dancing with the stars. They would, if we ever let them watch anything but a few minutes of football or basketball. Speaking of TV…

– I don’t want to hear, “Hey, put the game back on. Just 5 more minutes.” I’m satisfied hearing, “Nite nite, football TV” when tell him the players are sleepy and need to go to bed.

– I don’t want them to say, “S’okay…I’ll shake it off” as the face plants continue for a decade or so. I want the sobs and motoring to get a kiss on that boo boo as fast as little legs can get them over to us.

– I don’t want to ask what they’re doing. Constant announcements of “Ari running,” “Ari fall down,” and “Ari poop. Diaper Rash! ARI BUTT CREAM!” work just fine. (I’d be happy not to hear him say “Ari hurt” as he points at his belly just before he throws up his meal for the fourth time that day, but here’s hoping right-sizing his again severely stenotic mitral valve and replacing his pulmonary valve do the trick.)

– I don’t want to hear, “Hey mom, will dad be home in time to take me fishing on Saturday,” (which I will) if I had to take a work trip that week. I want no concept of time, or tomorrow, or whatever. I’m happy to go from big smiles and hearing “Dah-dee Skype!” to seeing his face when he wakes up the next morning, sees me, smiles just as big, but says the much better “Dah-dee real.”

– I’m sure I’ll melt when I hear, “Daddy, I love you.” But it ain’t gonna be any better than the current, “Dah-dee, ieeeoouuoueyewww.”

Yes, lots of things I don’t want to go away. Probably around the time all the diapers go, so will all of these things that fill my heart with more joy than I ever knew was possible. I hope the diapers never end.

When we get A.D.E. (after diaper era), what’s about to happen in a few weeks won’t be in the “before he remembers” period. It’ll be real, seared into his memory like so many scars he bears already.

Thankfully – assuming Ari’s not any more of a prodigy than we think he is – at an even 2 years old he probably won’t remember. What’s coming in two weeks will still happen and hurt, then probably fade. He’ll be left only with the nightmares and the fear that so often follow heart surgery at this age. Maybe he’ll remember that, even though he faced the Balrog for the third time, his Mom-mee and Dah-dee were always there the moment he opened his eyes from the battle dream.

I hope the diapers never end. I hope in the days following the coming battle, when the wake up screams are completely justified because his world and his safety aren’t as certain as they rightly should be, something about us being there will help make it all better. Just another kiss on the slightly bigger than normal a boo boo will still need to do the trick, ‘cause that’s all we got. (Here’s to hoping one round of methadone addiction and withdrawal is all he has to shoulder.)

I hope the diapers never end. I know they will, but holding on just a little longer.

Cardiac catheter to expand the Melody mitral valve on the 24^th. Open heart surgery to replace broken pulmonary valve looming.

Action stations, action stations. Set condition one throughout the ship. This is no drill.

***

*Dah-dee’s note: Ari is alive because his experimental Melody mitral valve is expandable; you can make it bigger without open heart surgery. Until the Melody, when babies needed replacement mitral valves, they came flawed and only in fixed sizes. Like sneakers, kids out grow them fast. If Ari didn’t get a Melody valve from the surgeon who is pioneering it, he’d be on open heart surgery #4 or #5 already with many more to come, prognosis grim.

With the Melody, he has a chance at a full life. But the Melody is not FDA approved for the mitral position and needs physical modifications to make it ‘just right’ for infant mitral valve use.

A major effort is coming very soon make these come true. For now, if you’re willing, please share this post in as many ways as you can. It is Congenital Heart Defect Awareness Week, after all. Parents with babies who need mitral valves (and most doctors that treat them) don’t even know this option exists. We need awareness. Gonna sound cheesy, but I’m sayin’ it anyway: please like to save a baby’s life, and share to save maybe thousands every year.