Thursday, April 30, 2009

Little Boy Blue

I love feet. Not big, grown-up, hair-in-strange-places, please-move-those-away-from-me-now feet, but little, baby, toes-like-tiny-pearls-all-in-a row, so-good-to-nibble-on feet. Whenever my kids go in for their milestone photo shoots I always make sure the photographer takes a shot of their feet. Strange? Maybe. But it's become tradition, and there is just too much momentum behind it to turn back now.

I was particularly excited to get a good shot of McKay's feet at our most recent photo op. To me his tootsies have become the barometer of our daily progress; a mood ring of sorts for days when I wonder if I should worry. They change shades often, but I've taken to calling my little man "Pinky Pinkerton" for as rosy as his piggies have seemed of late. That was until I got our pictures back.

You see, when McKay is alone his feet seem to glow with tones one would expect from a baby dubbed with such a warm-hued nickname.

But when compared to the feet of the fully oxygenated, it's, well, a bit alarming.

Hmmm. We do indeed have more work to do. Indeed.

Monday, April 27, 2009

Not Me! Monday

Okay, this is going to be fun. I have recently become what feels like the last person on the planet to discover a fellow heart mom's uber-popular blog And when I say popular, I mean popular. This woman has pay-for-space sponsors, was just today the subject of an article in The Boston Herald, and recently celebrated her 10 millionth (yes, millionth) hit. Her posts inspire more comments than most articles in the New York Times and she has a super fun tradition that I think is going to be totally liberating for me.

Every Monday this darling, brutally honest momma reveals (and challenges fellow bloggers to do likewise) something we, of course, would never do (but have somehow done). The practice is called Not Me! Monday. So here goes my first attempt.

I always have a perfectly kept house (read: the Health Department would not take my kids away (most days) should they stop by to do a surprise inspection). I would never allow any room, especially a critical, high-use space like the master bathroom to resemble a war zone. I would never keep said room in such a perpetual state of disarray that when I finally cleaned it up from time to time my children ask, "What happened in here. Where is all your stuff?" No. I would never have a room like that. Not me!

Whew. Now you know one of my deepest, darkest secrets. That means we're practically best friends. Wasn't that fun? Your turn.

Friday, April 24, 2009

Provider or Parent

My friends cannot have a child of their own. It's completely unfair, makes no sense, on and on and on. It is, however, one of those things God does in the universe every so often to teach those of us who are paying attention a lesson.

In their search for a little pitter-patter, this couple set their sights on China. Both have spent time living in the Orient, speak the language fluently, and are acutely aware of the oodles and oodles of little girls being raised in government-run orphanages there. They began the adoption process about two years ago--and just last week met their two-year-old daughter.

Let me back up just a bit. In the waiting and wading through the endless paperwork required to make this match, last summer the unexpected happened. A boy. A baby boy of a friend of a friend's teenage daughter who needed a home. Three weeks notice. A nursery to prepare. Instant family.

So with a son that could not look more like them had they mixed him up themselves, they flew their dreams half way around the world to complete the family they've started. They have known their daughter was alive for quite some time, but were required to wait and wait and wait while she stayed the required amount of time in state care. Cruel. Crazy. Calculated.

Finally, a family of four. Now with so much to do, there is also much to be undone. In the couple's most recent updates about their experience they explain their gorgeous daughter will be kept sequestered for a while as they transition her from identifying all adults as providers to identifying them as her parents--no shift changes, no rooms and rooms of other children to bathe, clothe, feed. From provider to parent--it's a transition where much more than semantics is at stake.

This provider v. parent distinction has occupied my thoughts almost continuously this week. How interesting. How tragic. I've turned introspective on this one and questioned, which am I?

I'm convinced some days my kids see me only as provider. I bristle when they bark out orders for drinks, snacks, shoes, toys and neglect a thoughtful expression of gratitude when I deliver. I've demanded to be thanked, I've withheld services, I've offered sample scripts of how the exchange may have gone in a perfect world. I've also been surprised when I hear my words come back, "Mom, may I please...?" "Mom, when you have a minute could you please...?" "Thank you" "I appreciate your help, mom." It's as if the heavens open for just a moment and you are smiled upon for resurrecting manners and awareness of others in this rude, give-it-to-me-now world.

There are also days when they need me as a parent intensely. When they race in at first sunlight to see who will win the prized spot in bed next me. When I have to shimmy into the middle of the pillow to make sure there's room for one on each side. (We'll have to see how the cuddling match will work out when there are three eager bodies to accommodate.) When they asked to be scooped up after school, read to for no reason at all, played with because I make the coolest sound effects. These are the moments when I LOVE being a parent.

However, after much thought this week, I have concluded that regardless of my children's moods that day, it is usually me who decides whether I am the parent or the provider. You see there are days when I choose to be merely a provider, a glorified zoo keeper really. Cleaning cages, offering meals, making sure everyone is safe and where they are supposed to be. These are the days when I feel more tense, more frustrated, more surprised by how much I don't get done in a day after all my obvious effort and busy-ness.

Then there are those days I admit are too far few when I actually get it. I get that this time is fleeting. I get that their simple requests for me to watch puppet shows and assume the role of whomever the villain of the day happens to be will soon end if I don't indulge. Someday they are going to stop asking me; that is inevitable. But in the meantime I don't want to do anything that teaches them that them not asking anymore will be okay with me. Intentionally or not, good or bad, sometimes we teach those things that are of the most consequence in the most unintended ways. I'm ready to be more intentional.

So I thank my dear friends and their new, adjusting unit of a family for helping me be more intentional, more aware, more respectful of this time in my life. I'm sure I will drift between provider and parent regularly, maybe necessarily. As for tonight, my kitchen is cluttered and I need to give the basement a quick once over, but I made a killer Lego spaceship today. Ty has already asked if he can keep it for himself. Victory.

Monday, April 20, 2009

Eight Months Old

My Dear McKay,
You are eight months old today--hooray, hooray! I couldn't resist a tiny impromptu (and admittedly amateur) photo shoot to celebrate the occasion. A few things you should know about yourself at eight months old include:

You continue to teeth, but have yet failed to produce any chompers. It's probably for the best. You open your mouth like a tiny bird whenever we eat in front of you. Had you any teeth we might be tempted to feed you food designed for the older set. (As if you need any more help growing.) I, for one, hope you continue to drool a bit longer.

You, my dear, are no longer a lump to be merely carried, hauled, moved and positioned. You have an opinion on several topics these days--diving for a bath at the sound of running water, a persistent whimper that begins any time I enter the room and lasts just until I scoop you up, and an obsession with anything red. Such opinions are a recent development that are as inconvenient as they are enchanting. No, you are definitely no longer a lump.

Your chubby arms make me feel more cannibal than omnivore. I nibble on you every chance I get. Your giggle entices me to continue to my meal of squishy, heaven-scented goodness. I will make you a deal--when you stop that delicious laugh, I'll stop snacking.

At eight months old, you continue to smile with your entire body at nearly any friendly face that looks your way. I can feel your sunshine--it is warm and wonderful and many good things grow in its light.

Don't get me wrong, you are not perfect. You are still a terrible sleeper, but I don't mind our moonlit cuddles. You worry me to no end, but aside from keeping track of your adoring brothers there is nothing more important I'd rather be doing. I know you could have chosen so many other families. Thank you, thank you for picking us. Eight months down, a lifetime yet to go.



Wednesday, April 15, 2009

It's What's on the Inside that Counts

McKay looks good these days. At 7 months, 3 weeks old he weighs in at a never-would-have dreamed-it 20 lbs 8 ounces. He's off the charts for his height and stinkin' cute. As we prepared to make our usual every two month check in with his cardiologist I thought it would be a good time to document not-so-tiny Mac's typical check up routine. I can't ever imagine forgetting what this experience includes, but someday we might be lucky enough to grow foggy on the subject. Mostly, I want McKay to know how proud I am of my brave little babe.
The visit always starts with a chest xray. McKay has a knack for falling asleep in his cozy car seat on the way up to the hospital, so getting undressed for the xray is made even more disorienting because each time we have to wake the poor thing from la-la land. He usually handles it in stride and even giggled at the tech this time. The inside peek the xrays give are always impressive (see above) and remind me that the real truth is a little more than skin deep for my guy.

This visit involved an echo cardiogram (basically an ultrasound of his heart and arteries) to examine Mac's most recent repairs. I was more than a little surprised when the procedure was scheduled to be conducted unsedated. After all, McKay is a very busy body these days. But he cooperated just long enough to get a solid peek at his pulmonary artery which showed good flow and led the team to believe the Glenn is doing its job.

Next it's on to an oxygen saturation, heart rate and blood pressure check. (You have to love the little arm cuff.) McKay has always hugged the low end of each of these measures. Yes, I am concerned to see a 74 percent blood oxygen level considering we're just 5 months post-Glenn, but it does follow suit for him. His cardiologist advised we get a solid sat check at least once a month going forward to make sure he stays stable. We've also been told that if we decide to fly anywhere, McKay will likely need oxygen to stay in the safe zone on the trip. Oy. The thought of bringing those awful green tanks back into our life is more than I can think about. Anyone for a road trip?

The most important conversation of the day centered on the selection of a surgeon for McKay going forward. It was obvious that the topic was still a fresh and emotional one for our amazing cardiologist. (Are you slightly concerned that McKay's as big as the cardiologist that's in charge of saving him? She's itsy bitsy, but optimistic and smart. I LOVE her.)

She assured us that an intense search is on for a senior cardiothoracic surgeon and whomever they find might be just who we need. Her plan is to do all she can through therapy and more minor interventions to keep McKay healthy enough to delay surgery until he's at least two years old. I was surprised by the news. Apparently by two, the chest cavity has enough room to put in a larger conduit during the Fontan procedure to last McKay a decade or two. As long as he stays more pink than blue during the process, I'm in. It was a little rattling to realize that if he needed his Fontan tomorrow, there is currently no one here ready to tackle the complexities of his particular anatomy. We chatted about several out of state recommendations and I feel confident she'll help us find the right person at the right time. Until then, the most important news is that we have time. Once again, it's comes back to realizing that making the most of today is the goal at hand. That assignment is so much harder than it sounds, but we're getting better at it.

So there you have it. That's the dance. It has a tricky, hurry-up-and-wait rhythm, but we're getting more comfortable with the steps. And as far as McKay goes--he's been pure music for all of us. The boy has heart.

Tuesday, April 14, 2009


Easter weekend was truly lovely.

We kicked it off with a good, old-fashioned neighborhood egg hunt. (If you consider a field full of eggs everywhere you look and a "Recycle Eggs Here" box old fashioned.)

Although some found it more exciting than others...

As has become tradition, the hunt is followed by the careful decorating of eggs--
of both the hard-boiled and sugar cookie varieties.

Easter morning brought surprises all its own.

But none better than finally being at church together, as a family, all at once. Thanking Christ for the blessing of our togetherness. We sang, we colored, I rocked a fussy baby to sleep into a heap on my lap where his moist, soft breath wrinkled my pressed, pink Easter blouse and somehow made it perfect. Yes, Easter was truly lovely.

Wednesday, April 8, 2009

Upside Down

This week has left us trying to find the topside of our shaken snow globe. Monday night we learned some devastating news about McKay's surgeon. The man we searched for, researched, insisted on, trusted, prayed for, wept across from in gratitude overflowing is now battling for his own life after a shocking and serious diagnosis. We have already begun praying for a miracle all his own.

I first heard the news Monday night at a benefit concert for an adult version of McKay and his buddies, musician Paul Cardall. At 36 years old, Paul's overworked heart is now in need of a replacement and after eight months on the transplant waiting list, he was also in need of a well-deserved outpouring of love and support. It was a celebration. A reverencing of life. A group prayer.

As Paul closed the concert he dedicated a song to McKay's surgeon and I was confused. I searched out some other heart moms after the concert and learned the news. He was sick, he had resigned, he had no plans to come back to the hospital. The news precipitated my first real panic attack. I cannot believe how sick I felt. I could barely breathe. All I could do was cry and say, "Who else can save my baby; there is no one else."

A few days later, I'm still having moments where I need to remind myself to breathe. But I am finding a bit of clarity. My faith is in the plan, not the man. Right? Right? Now I'm not so sure. Even more surprising and disappointing to me is that this new news, this new reality is proving my faith may have not been as completely and purely placed as I'd hoped. Yes. That type of soul shaking honesty is surely more worthy of panic and disappointment.

Mostly my search for air and firmly-placed allegiance to this particular miracle maker stems from comments made in our post-Glenn debrief that McKay's Fontan will be complicated by his dextrocardia. He mentioned doing some mental mapping during the Glenn while literally staring at McKay's unique anatomy and planned to make some notes about it in preparation for modifying the Fontan for McKay. First thing Tuesday morning I called and had a nurse read me McKay's post-op notes--no mention of future plans or considerations. Where are the notes? Please find the notes.

At this point we are officially praying that this gifted surgeon will be healed and then exercising complete faithlessness by trying to decide if we're going to need to look outside of Utah for McKay's next surgery. When considering all the variables we've tried to orchestrate, to control, when planning for McKay's treatment and future, this is truly the one variable we had never considered. And I'm sure it's the one thing our heart hero of a surgeon didn't give much thought to either. Serious irony. Serious tragedy. Serious prayers.

McKay's situation will find its answers. I will find my breath. We will find a rhythm and move forward. Tonight we ask you to join us and petition God on behalf of a special man who is as deserving of a miracle as anyone I know. Our hearts (half and whole) are with him.

Saturday, April 4, 2009


I'll admit, trips to the spa have been a hard sell for me over the years. I have never been able to justify spending money in exchange for time away from my family with nothing tangible to show for it in return (except for the polish, of course). I know some who swear by regular rendezvous to these sweet-smelling, dimly-lit establishments. Please don't get me wrong, the few treatments I've received as gifts over the years have been truly lovely, heaven sent really. But it wasn't until my last slide into the slippers that I came to understand the real significance of the spa ritual.

You see, seaweed facials and paraffin-dipped pedicures can be far from selfish. Spa treatments with all their deliciously pampering ways are not solely about escape for all who partake. For me, the real benefit to a half-draped hour in sheets warmed to perfection is about remembering. In my most clear, relaxed moments of body bliss I start remembering all the reasons I choose to put others first most hours of most days. I start remembering all the things that make me truly joyful. I start remembering that despite the roller coaster ride life has put us on in the last year and many to come, I am full of gratitude for the experience. And all that remembering pulls the smile in my heart closer to the surface; right where it belongs.

After my last visit I went home and thanked a supportive husband, kissed the wet heads of freshly bathed kids, and recommitted myself to being a more cheerful, more patient, more grateful wife and mother. And really, isn't that the most fulfilling and unselfish thing any of us can do? (I'm not going to lie--the grapes and cheese plate were strictly for me, however. I love snooty snacks :))

Truth is I haven't been to the spa in months now. But there is this contest. Yes a contest. And though I normally loathe contests, I'm going to throw aside my checkered, non-winning past and hope for the best because this contest is about spa treatments.

Sego Lily Spa has launched a search for an official blogger. In exchange for blogging about a rigorous (ha!), 12-month schedule of spa treatments, Sego Lily is offering, well, a 12-month schedule of spa treatments (strictly for research, of course). Can you even imagine?! I can. And I figured why not me?

So I am officially (and gleefully) throwing my fluffy white robe into the ring on this contest. Feel free to read more about it here and get ready to act. (Apparently spas are true democracies and I'm going to need your vote!)

Wednesday, April 1, 2009

Currently: 0 Accident Free Days

Emergency rooms and boys. Boys and emergency rooms. We managed to keep these two magnetic forces apart for exactly 2,280 days since the XY chromosome first made its debut in our parental lives. However, our accident-free record reset itself yesterday.

About 10:20 yesterday morning the school called. It's never good to see the school's name on Caller ID during school hours is it? The principal let me know in a very calm voice that Preston had fallen on the playground and hit his head. I mention her calm demeanor because it was in clear contrast to the scene in her office as I could hear Preston belting out in the background. I let her know I was on my way.

When I arrived, Preston was hunched over on a tiny preschool chair refusing the cold pack the secretary was diligently trying to apply to the back of his head. He looked genuinely relieved to see me and turned up the volume on his sobbing to make sure I knew he was hurt. I loaded him up and we were on our way. We made it about a quarter mile before Preston got a panicked look on his face and threw both hands over his mouth.

I veered spastically off the road and opened the door just in time for Preston to let me know his head injury might be more than just a bump. I flipped an immediate u-turn and sped a few blocks to his pediatrician's office. After unloading McKay and carrying both boys through the blizzard into the office, the triage nurse told me that they would not see Preston and he needed to go to the emergency room. Really? You won't even look at him? Really? And I just agree and walk out the door? I must have been stunned into compliance. (I didn't get heated about this exchange until I thought about it at the end of the day. The nurse didn't even look at Preston. What if he was really, really hurt? Am I truly the best mode of transport to Primary's at that point? Is there NOTHING the 7 doctors that work there are just a tincy bit more qualified than me to assess and treat? Seriously people. Come on.)

After heading back to the school to check Ty out early, back home to grab McKay's supplies, and then to Grandma's house to drop the whole jumbled mess on the lawn, we made it to the hospital. Another THREE HOURS in the waiting room sitting in front of a vending machine with a four year old that last ate half an Eggo more than seven hours ago trying to explain why he cannot eat any M&Ms before he sees the doctor, they finally called his name.

One diagnosis: mild concussion, one dose of Tylenol for his headache, and one red popsicle later all was right with the world.

So there you have it. Our first "emergency". Truth be known, I cannot remember the last time my busy boy let me hold him in my lap for hours on end. I cannot remember the last time when it was just him and me for more than a few minutes at a time. I'm sorry it took a brain-rattling bump to get there, but I've learned to unwrap the gifts regardless of when and where they arrive.