Totally Two

Mr. Magic turned two last Friday.

Before the party, there was a fishy gift or two.

"Ish. Ish." It's the only word Mac says with any regularity. Now he has his own tank; just the thing to encourage his fascination with the deep sea.

His "Ish, Ish" cake was covered in special details.


Chock full of love and personality courtesy
bakers and artists Aunt Hilary and Uncle Ron.

A major monsoon brewing outside brought our picnic plans indoors. Which meant fishing for prizes over the balcony rather than in the pond.


But no matter, there was much to celebrate and everyone made the most of Plan B.



No one more than McKay. Although he's still a bit overwhelmed by crowds and very weary of anyone outside his inner circle coming within 10 feet of him, his spirit seems to be coming back. He's quicker to laugh, more willing to be held, and more inclined to share a smile than he's been in weeks.


Watching our happy boy return back to us and enjoy a celebration meant just for him, was a gift.

Truth be known, just a little more than a month ago we avoided talk about his birthday plans. Who, what, when, where? It seemed too risky to discuss. We were getting through today. Just today.

But two? Turning two meant we had an entire year to look forward to. It was a milestone that made me want to gather everyone in. I've felt very private about it. Quiet. And not at all how I expected to feel.

Starting this new chapter feels amazing and unsure. Up until now there has always been a huge surgery, a milestone to work toward and prepare for. That type of work and worry takes up thought and time. However awful, the milestones so far have been concrete, unavoidable, sure.

Now, post-fontan, at home, ready to try "normal," there is less to count on. McKay is not "fixed", but he is as well as he's ever been. He's not through with surgeries, intervention, procedures, but he's through for now. It's all ad hoc from here on out. And although it might seem strange to feel anxious in the land of better than ever, the truth is there is nothing sure to anchor to here. There is just tomorrow and the next day and the day after that. We have climbed our next mountain of sand and we will do our best to stay on top until the landscape starts changing underneath our feet again.

Our best guess is that we have about 8-10 years; a decade before things get too serious again. At least that's what it seemed with the age groups we saw in Philly. Babies. Toddlers. Pre-teens. That seemed to be the age spread as we wandered up and down the halls of the cardiac floor at CHOP.

The plan is to return to Philly every year. It will be a family trip - the brothers three for a yearly pounce into the city of brotherly love. We will visit for check-ups and check-ins. For studies and research and access to the most renowned set of post-fontan specialists in the world. McKay is now affectionately known to the heart world as a "Single Ventricle Survivor." It's a title we were not aware of until we had actually joined the club. And it's a title we will fight to keep.

As my pediatrician advised this week, "It's time to stop worrying about surviving, and turn our attention to thriving, developing and helping McKay reach his potential." Speech therapy will begin next week. This kid needs a voice. Somehow I think his lack of language to this point has been a tender mercy.

We are more than grateful. To be at home. To be surrounded by family. To be celebrating.

Happy Birthday my totally two!
You have taught us to live deeper, appreciate more and move on more quickly than we could have ever learned in a lifetime without you.

Rush for Summer

The Monday after we arrived home from our field trip to Philly, Matt said, "Look around. It's summer. We almost missed it."

It was true. Summer had a late start in Salt Lake this year and it was just beginning to warm up when we flew the coop. We sat silent as we drove past roadside vegetable stands, people in flip flops, and camping trailers clumsily making their way onto the road loaded down with a week's worth of fun.

"We're NOT going to miss this summer," Matt declared.

And so our mission to pack summer into a few short weeks began.

Because we've already had three weeks away from work and three weeks of time off is a lot of time away no matter where you've been, we've done our best to make the most of weekends for our summer fun. We caravaned the entire extended family up to Bear Lake and back, spent a late afternoon with friends at the water park, and, this weekend, we took the boys to the Green River.

The river is majestic - in absolutely every sense of the word. It rolls and tumbles and inspires deep breaths.

It's just the place for brothers to make memories with each other,

and a grandpa who will stop anything to spend time with them.
He makes them feel as special as they are.


Mac was more the beach goer than river runner this trip. He played hard. And remembered some good advice about an apple a day...


All tuckered out, McKay clutched this lucky apple for all it was worth; falling asleep in the sun, breeze, and sticky-sweet smell of fruit-drenched fingers.


Summer is a season of play. Of being together and stopping time to enjoy the sunshine. We're soaking it up. And the time together has been healing -- for all of us.

Looking Forward

Grandma called today. We've apparently gone too long between posts. I apologize. We've been preoccupied; standing in awe of the month that is now behind us. Did I just say that? Yes, the Fontan is behind us. Pinch. Pinch. Pinch. I'm still a bit reluctant to ring the victory bell, but we cannot deny the amazing grace that has attended our family in the last 30 days.

One month.
Just one month to go from this:

To this:

Off oxygen. Recovering. Trying to keep up.
The strength of his will takes my breath away.
I'm about to call act three of this beautiful nightmare complete.

This is Mac's last xray. Almost crystal clear. Almost. Just a tiny amount of fluid remains in each of his oh-so-oxygenated lungs. He's sat-ing between 88-91. And that's at Salt Lake's sky-high 4,400 feet above sea level. I still cannot quite believe it, trust it, or begin to exhale myself.

Of course, the meds continue. McKay receives 3 doses a day of diuretics and 1 aspirin. He's good at the aspirin. He's taken it everyday of his life. He opens up like a little bird and I drop in the chewable tablet as he toddles away. Easy.

The diuretics are a different story. Clenched teeth. Screaming. Tears at the mere sight of the syringes. He's learned to hold the liquid in the back of his throat and gargle it back out. We do our best, but I'm sure he only swallows about two-thirds of his dose. I dread giving it to him. But I dread the thought of going back to the hospital more. So we'll endure three more weeks of it and then put it behind us and try to forget.

Although I'm not sure forgetting is entirely in the cards.

I made the mistake of reading McKay's operating report. I remember only three horrible things from the two page blow-by-blow: Oscillating Saw, Heart-Lung Bypass - 62 minutes, Circulatory Arrest - 21 minutes. And it's those chilling phrases that make it hard for me to say "No" to chocolate covered pretzels before dinner - because they make him smile.

McKay is still very much in recovery mode. He's still napping 3-4 hours each day. He still lays down in the middle of the floor mid-play and calls a time out.
But he gets back up.
On his own.
In his own time.
The way he always has and the way, I suspect, he always will.

Just yesterday he clawed his way up two flights of stairs to his room. Last week he made just two steps before he swooned backward and let me catch his fall. Progress. It is sure and steady and remarkable.

These two crazies are fiercely protective and seem to know just what Mac needs. They have been patient beyond their years, understanding beyond expectations, and just the right medicine for a little brother who idolizes their every move.

We are blessed. Many have apologized to us for having it "so hard." I must respectfully disagree. In the spectrum of health challenges that could be ours, Mac has taken us to the edge a couple of times and then turned his train around pronto and headed directly for a happier track. He makes this journey about as easy as it can be. As for the fact that we must be on this journey at all? My two cents is this: No matter your challenges, life is about as hard as you decide it's going to be. If you choose to wake up everyday, curse the heavens, and declare "woe is me" before rolling out into the world then, yep, life is hard.

And the real tragedy in self-pity is that it is not what God intended. I know He blesses us with exactly the circumstances we need to grow and learn and become more than we deserve. I will teach nothing less to my kids because I know it to be the truth. I've asked and I've been answered. I want you to know that I know that.

Some days joy comes more easily than others. But it's on the hard days, the days when you must choose joy, that it tends to be the stickiest, stay the longest, and taste the sweetest. It's on those days that it surprises you with how simple life really is and how deeply you appreciate what is yours - all of it. We choose joy.

Home

Home. We made it. And I've been too busy pinching myself to post. I'd apologize, but it's hard to feel bad about anything that's happened in the past 72 hours. It is SO good to be home.

Our freedom flight did not hit the skies until 5:30 Saturday night. That meant we had the entire day to pack it up and pass the time. Together. Outside the 12 x 12 room where we had just spent the last 13 days. Time to do whatever we wanted. I could not stop smiling.

So we drove. We drove 90 minutes to Atlantic City. It was 102 degrees and crazy humid when we arrived. That led to a 10 minute sprint to touch Mac's toes into the ocean for the first time and quickly back to the car. Heat, heart surgery, toddlers; it's a bad cocktail we wanted no part of. Don't worry; he'll get an extended opportunity to put his toes into the sand soon enough.

The flight home was perfect. McKay was an angel. He slept, snacked, laughed, and charmed the cashmere blazer right off the button up-type across the aisle. It's officially impossible to keep your guard up with this kid. Stand back. He'll melt ya'.

Sunday seemed a long day waiting for the brothers to arrive. My sister did not get my message about us being home until their journey home was well underway. She helped keep our arrival a secret from the boys who rolled in speechless. The hugs between us were one thing. I missed them terribly - ached for them, really - and it felt so good to feel their arms around my waist. The reunion between brothers was something to behold. It wasn't wild hugs and laughter. It was quiet, and thoughtful, and a just-let-me-take-a-minute-to-look-at-you moment.

Preston marveled, "No tubes, mom."

Ty patted his head and said, "We need to be careful with him, right?"

Right. However, I cannot guarantee how long McKay will agree to be careful with you, I thought. And after a few moments, it seemed McKay remembered. He stuck out his little Frankenstein arms and began harassing the boys. Grabbing at their necks and shirts and middles from behind. They giggled and gently patted him away.

These brothers are thick and it's a beautiful thing to behold.

Matt and I secretly held our breath until Monday. They called early and asked us to be there within the hour. Here we go, I thought. An xray was about to tell us if the togetherness could continue. Come on buddy.

Everything about McKay said he felt better. He colored in the lobby why we waited for the xray. He seemed happy and well.

I love it when I'm right.






















His xray was clear. CLEAR. As in: No fluid. No effusion. Poof! Gone. Magic.

Our cardio angel could not have been more pleased. She told us to cut one of the six doses of meds he's currently receiving and gave us the week off. We'll check back in next Monday to make sure all continues to look amazing.

We celebrated with a long overdue haircut.





















Then came home for a dance party with the boys.

Today, our hearts all feel more whole. This week has taught us a few things we already knew: Prayers are answered. Hope is always in order. Everyday miracles surround us.

We also learned that hospitals are not true places of healing. They are places of fixing. Of brilliance. Of absolutely life-saving events. But no one leaves a hospital healed. Especially two year olds who cannot understand why every visitor they receive in this strange place brings pain and fear. And, most of all, why mom and dad allow it to happen again and again. No; while we were feeling grateful, none of us felt healed.

Real healing comes when the spirit is allowed to feel safe and cared for and loved. Home is magic. Family and familiarity and routine. Our smells. Our people. Our space. It was exactly what Mac needed to get over his complication. And we are drop-down, on-our-knees grateful for one of the most pedigreed, trained, and skilled medical teams in the world letting go of all they know about medicine and their power to treat, and remembering that their ultimate goal is to heal. Well done.

His Way, All the Way

McKay's xrays and labs this morning were...drum roll please...better. Not completely clear, but improved and good enough to talk the docs into letting us do a follow up on Monday in Salt Lake!!

We just booked the flight home and plan to touch down tomorrow night; one day ahead of our boys' return home from a camping trip with my sister. Can you say, "Surprise!"?

Our Mac's recovery and discharge were slightly less than traditional. But then again nothing about this kid is ordinary.

We are elated.
We are beyond grateful to so many, for so much.
And now we are home bound.

Praise be given.

Paroled

Mac's effusion is unchanged. Through four days of adjusting meds, up-ing doses, back and forth from IV to oral--unchanged.

So unchanged, in fact, that they are talking this morning about discharging us with the promise to stay in the area and having McKay come back for daily outpatient visits through Monday.

At this point the theory is that he may do better outside the hospital than in. Freedom, interest in play and activities, a sunnier attitude. It all goes into the mix of healing and wellness. I think it's a good theory.

It all hit home yesterday when one of the cardiologists said, "I think we're trying to treat an xray instead of a child. Look at him. His sats are good. He's walking, playing, eating, sleeping. He just needs to go to the park and kick this thing."

Post-park and play over the weekend, if all is good Monday--we're home.

This turn of events is both nerve-racking and exciting. I am DYING to love on my other boys. Remember them? Tyler and Preston have been on the party-sleepover-vacation circuit for nearly three weeks now. It's time they had their mom home to make them practice piano and clean up their room :). Hardly. I just want to snuggle, make up stories, play games, see and hear all about the pictures they took on the camera we left them, and read the journal of events Ty's been keeping (just so he doesn't forget to tell us something, he said).

From here we just need McKay to take his meds and show a stable or clearing xray every morning from now until Monday.

I know it's a lot to ask kiddo, but you're clutch. Let's do this.

Sincere Thanks

Last night my husband returned alone to a quiet, darkened corner of the Ronald McDonald House here in Philadelphia. It's a ritual he practices every night. He waits until McKay falls asleep, kisses me goodnight, and leaves me to sleep on the plastic couch at McKay's bedside. It's a generous act; he gives up his place knowing just one parent is allowed overnight and I would only worry and call an obnoxious number of times to check on McKay if he were to stay.

But last night, he was the one to call.

"There is a package here," he said.

"It's full of goodies, and Thomas the Train toys, and cards."

"Wow," I responded. "Who is it from?"

"There must be a dozen cards here Mindi. This is really amazing."

And yes, it was.

I journey in my work life alongside some of the most exceptional human beings I have ever known. We are not just colleagues, we are community. We are confidants. We care--genuinely, sincerely, and deeply for each other. This gift was more than all of the thoughtful things and words packed inside; it was another evidence of the power and blessing I feel in my life from that very special place, so full of extraordinary people.

Thank you for your prayers O.C. Tanner. For this and so much more, we are beyond words.