Waxing Philosophical

"Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work; you don't give up."

ANNE LAMOTT

I've been thinking a bit about hope lately. The nature of hope. The idea of hope. The why, what, and when of hope. When is it okay to hope? When is it foolish to hold onto it? This may turn into a bit of a ramble - but it's something I need to capture. I invite you to bear with me or don't -- this one is for me.

I'm certain hope is on my mind because 2010 has been a year of hope for our family. Hope for goodness in the unknown. Hope that we made the right decisions. Hope that tomorrow would come and the next day after that and we would all still be here to welcome it -- together.

Of course, we did not rely on hope alone. Hope is no substitute for preparation. You inform yourself, you research, you connect and confirm, and you pray. And when all that can be done is done, when all of the decisions that can be made are made, you invite hope to sit beside you and you take the journey. There is no avoiding the journey.

Hope was the fuel we relied on when we were running on empty. It filled us up and set us straight; hope offered direction and focus. Hope became the energy we took in and passed on to our family, our doctors, our children. It helped us to see beyond now to tomorrow, to better. Hope helped us create a vision we worked to realize. There is no avoiding the work.

Our every hope has not yet been realized. Our family still operates a degree or two east of normal, but we are here. Together. And in that there is hope. Our dreams and wishes and hope continue to invite possibility. Amazing, unexpected possibility.

Hope is light. And no matter how many shadows you must pass through to find the light, you walk because you have hope that it will be found. A wise and dear friend said, "Light and shadow bring depth into our being." I love that. I feel that. I aspire to understand that truth more fully. Indeed, if 2010 was a year to connect with and understand the power of hope, I walk into 2011 full of intention to invite light into every corner of my life. More light. Less shadow. I think that's how it works. And somehow I feel that although I cannot control the timing or depth of the shadows, I can control the light with which I meet them.

Vague - yes. Ethereal - probably. But that's the great thing about personal truths and growth - they are your own to ponder and understand. Your own. Embrace yours.

The Silent Treatment

Mac and Maui were made for each other.

Hey there friends! Yep, still here. Still happy. Still trying to fit it all into the day. Still falling short when it comes to maintaining our little journal of adventures here. Since Mac has become more mobile, leaving all of his tubes and troubles behind for now, we've been on the move. But today it's not about getting caught up on Halloween, or Thanksgiving, or an impromptu trip to see Mickey or Maui. I hope and plan and have committed to update over Christmas--really. But today, I need your help.

After three months of speech therapy, McKay has nothing to say. He's becoming increasingly frustrated with our communication routine (or lack thereof) and has starting hitting and biting to make his point. Not so fun.

I'm signing. I'm repeating words and short phrases at nauseum. We're watching all the language videos. Reading books. He's going to nursery where he can see and hear other kids speaking and singing. He'll start a special preschool program in January to augment his opportunities for interaction. Grandmas are on board. Aunts are on board. Babysitters are doing the same. The poor kid probably thinks you have to say everything five times to be heard. And yet, nothing.

This week our speech therapist has recommended we commit to a speech development program called The Hanen Program. Have any of you experienced this program? It's an extensive on campus education program about helping children communicate. Please say someone out there knows something about this! I need to know if this is something that will be worth our time. The time commitment is, well, a big commitment. Not so bad if I can take Mac with me after a day at the office and we get to focus on him for a few hours, but this program is just for parents. No Mac. Just mom. I can't love missing an entire night each week with my boys. I can't love that I won't be actually coaching him through the process, but sitting in a classroom discussing whether or not McKay is better or worse off than all of the other kids whose parents will be there too. Is that selfish? Am I being short sighted? Bad attitude? Seriously - tell me.

So here's the plea -have any of you experienced speech delays with your kids? Have any of you after taking a truly hard look at whether it's you that has enabled that delay and changing your ways, still been frustrated by your child's seeming disinterest in language, imitation, sign or anything that has to do with communication? What did you do?

Don't get me wrong. McKay plays, he dances, he follows some directions, he seems to understand most things we tell him, he loves, he kisses, he squeezes and problem solves. But he does not speak. He is 28 months old and has no words. And everyone seems to think that's a bad thing. A really bad thing.

Part of me wants to believe that it's okay. He'll make it up. He'll figure it out. But professionals who study this topic seem to be worried or puzzled or fascinated by it. And that gets me to worrying too.

So that's it tonight. Nothing particularly cheerful aside from the picture of Mr. Mac at his favorite fountain on our latest search for some sun. Just a mom who's been silent for a little too long searching for some answers for her son who seems perfectly content to enjoy the silence. Please, speak up. We're listening.

Dream Big

If no news is good news, I guess you can assume we’ve been living a whole lotta good news over here.

The last few months have been a breath-holding, too-good-to-be true, waiting-for-the-other-shoe to drop (but-it-didn’t) exercise in trust. Trust that the doctors did exactly what they said they did. Trust that the repairs would hold. Trust that Mac’s body would handle the changes well. Trust that we would be able to tell if anything was going wrong. Exercising that kind of trust can leave you exhausted.

But yesterday, we received confirmation --confirmation that everything is going as well for McKay on the inside as it appears to be going on the outside. The docs directed us to stop all of McKay’s post-surgery meds one week ago. They wanted to evaluate him on his own merits – no assists, no intervention. And our drugless little wonder could not have been better. Aside from a liver that seems slightly enlarged due to a change in pressures from his new plumbing, McKay received a clean bill of health yesterday.

After the exam, x-rays, and tests we did something the doctors have never done with us before-- we conferenced about the coming years, not months. We talked about the importance of social development instead of prescribed isolation. We talked about the possibility of him going years, even decades without another surgery. We even talked about signing him up for the four-year-old soccer league when the time is right. I never let myself plan, dream, or envision anything that far ahead before yesterday. Permission to dream for yourself is empowering, permission to dream for your child is transforming. It's a concept to which I'm still happily adjusting.

We're not completely out of the woods yet. Mac still has a way to go before he’s up to par developmentally. He still has no real, recognizable words. We give him generous credit for nie, nie when he wants to get into bed and I thrill each time I request a kiss and he delivers, but it's a long way from effective communication. A speech therapist now visits us three times a month and we’re working on some simple signs and animal sounds. The progress is slow, but there is progress. Just this week he has started to make a "mmm" sound when he sees a cow, seemingly trying to spit out some semblance of "moo." Progress.

Some have told me to expect a month of developmental delay for every minute they shut McKay’s system down entirely – every minute he was technically “gone.” For McKay that time totaled 29 minutes, 29 months. The child is only 26 months old. So technically, I guess we could say he’s doing better than expected. I really don’t know what to think, I only know how to feel. And I feel grateful.

I am so thankful it overwhelms me, stops me, and causes me to see everything in life in new and glorious ways. Everything. I've been given the chance to dream, to hope, to imagine futures for all of my children. All of them. And you know what they say – if you’re going to dream, dream big. Watch out big, wide world. Mac is here to stay.

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.