Friday, May 11, 2012

A Few Glimpses into the Life of Sam the Toddler

March 17, 2012, 10:00 am
My legs are barely propping me up after my first 12 mile run, and Jason has spent the last two hours drifting back and forth between the living room and the kitchen, cleaning up last night’s party mess.  I turn over the cake stand and watch Sam’s leftover banana/Gerber puff cake fall like a brick into the kitchen trash.  I thought the cake was pretty tasty, but Sam was suspicious of eating anything twice the size of his head, even if was made from scratch and in the shape of a heart.

As Jason and I chat about our mornings, Jason loading the dishwasher while I Clorox the counters, we arrive at the horrifying conclusion that we BOTH gave Sam his four medications this morning, which means that Sam has been double-dosed.  Panicked, I drop the Clorox wipe and run up to Sam’s room, fully expecting to find him lying in a coma. 

Instead, I burst into his room to find him sitting up in his crib, happily chewing on Wubbie.  He lets out an ecstatic screech when he sees me.  As he gives me one of his huge, open-mouth smiles, I realize that I have holding my breath for the past two minutes. 

I bring Sam downstairs to play while Jason and I make frantic phone calls, trying to figure how damaging our mistake actually was. We are bad parents, I decide.  Only bad parents have to call places like Poison Control.  On the floor next next to me, surrounded by new toys, books, and clothes, Sam only has eyes for one present: A heavyweight boxing champion belt.  It’s gold and shiny, and, judging by the way Sam is lovingly licking it, it is also delicious. 

In the meantime, Poison Control and the cardiology department at Children’s reassure us that Sam will be fine. Even with an extra dose, his medications are still "within safe parameters." Jason and I turn our frenetic energy back to cleaning since we need to pull the house together before Sam’s occupational therapist gets here in ten minutes.

Although the wrapping paper and boxes have been cleared out, tangerine and lime colored balloons with white “# 1’s” are still hovering everywhere.  We decide it’s time to set them free because our little townhouse is crowded enough as it is.  After leading the bobbing balloons outside, we count to three and let them go.  They drift up swiftly and drunkenly above the trees, above everything, until they are just tangerine and lime bubbles in a big blue sky.

“Where do you think they’ll come down?” I ask Jason, quietly hoping they never will.

April 27, 2012,  9:45 am
As we wait for the neurologist, Sam and I walk around the halls, touching pictures and peering into empty offices.  The outpatient halls of Children’s Hospital are quiet and still.  Unlike the inpatient halls, there’s no beeping, no crying, no rushing.  Just the sound of someone lightly pecking at a keyboard in the office down the hall and the buffered hum of construction outside the window.

Sam had an EEG a week ago, and we’re waiting for the results.  A year ago at this time, I looked over at Sam in his baby swing to discover his hand ticking uncontrollably.  The rest is a dark blur: endocarditis, a “vegetation” going to his brain and causing a stroke, an early and risky Glenn surgery, a missing vegetation and the likelihood of half of Sam’s brain being destroyed.  And then, a long road to recovery.

The neurologist comes in with a smile and sits down.  Here are the results she shares:

Sam’s EEG from LAST YEAR (5/19/11):
“…moderately abnormal…due to the following findings: (1) 6 clonic seizures that emanate from the right central region. (2) Frequent positive and negative sharp occurring in multiple locations. (3) Dysmaturity. (4) Rhythmic theta. This EEG indicates significant cerebral dysfunction and dysmaturity.  This is predominantly found in the right hemisphere where there are spikes, sharp waves, and 6 clonic seizures with focus in the right central region.  This likely results from deep white and gray matter lesions.  The results may indicate a lesion that is somewhat more extensive than that seen on the MRI.”

Sam’s EEG from last week:
“This is a normal EEG during awake and asleep.”

After testing Sam’s reflexes, tone, and strength, the doctor confirms that Sam appears to be normal and recommends tapering him off anti-seizure meds.  Also, she thinks Sam is left-handed, which pleases me since I, too, am left-handed and secretly love all left-handed people.  She pats Sam on the head, shakes my hand, and says goodbye.  No follow-up needed.

As we walk out the main entrance, I glance over to the inpatient side of Children’s Hospital, feeling a familiar lump in my throat.  I always have the strange urge to hang out in the waiting area, or to grab lunch from the hospital cafeteria.  It feels unnatural and selfish to leave—the same way I feel when I drive past homeless people in my nice car—but  I navigate Sam’s stroller around the legion in my brain, out the thick sliding doors, and into a windy, sunny day.

May 7, 2012,  6:00 pm
Sam and I are having a dance off to J.Lo’s “On the Floor” when I hear the garage door open. I decide to call the dance-off a tie.  

When Jason comes in, I can’t wait to tell him the news: Sam has said his first word (aside from “Dada” and “Mama.”)  Jason looks skeptical.  He often thinks that I make things up to make Sam look good.

In the meantime, Sam is inflicting his daily torture upon Roxy, our cat.  I’m not sure why she takes it, but she just sits there in his play space, letting him grab her tail and pile Uno cards and legos on top of her.  If he tries to grab her whiskers, she’ll grudgingly half stand up and move about six inches away, where he will happily pick up the chase, bear crawling to her to start the hair pulling and toy piling all over again.

The way he crawls reminds me of baby sea turtles trying to make it to the water: Breathlessly, forcefully, he propels his body across our sand-colored carpet with some innate, magnetic sense of destination…the cat? The recycling bin?  His box of legos? It’s hard for me to tell where he’s headed, but when he gets there, it’s clear by the way he gleefully grabs the cat’s leg, rolls the empty Diet Sierra Mist can, or flings his legos, that he felt confident about where he was going all along.

Today, as Jason joins us on the floor, Sam is pressing both of his chubby hands into Roxy’s back. His babbling grows quiet for a moment, and he says, “Ca.”  He can’t quite get the “t” sound at the end, but he is clearly saying “Ca” repeatedly as he kneads Roxy, who looks annoyed and unimpressed. 

Jason looks at me in disbelief.  “He’s actually saying it, isn’t he?”  I nod.  He's been saying it all day.  It’s unbelievable.  It turns out this kid knows English.  This whole time, he’s been faking us out with his baby babble when he somehow figured out what a cat was.

Later that evening, he casually says “Bye” to his Fisher Price piano.  When I put him to bed that night, I wonder if I will come in the next morning and find him scribbling long division on the wall, like a baby Matt Damon in Good Will Hunting

A few days later, Sam is admiring his reflection in the mirror while I’m wondering where my baby went and who exactly this little boy is.

Sam flashes himself a coy smile and says, "hi."


  1. Wow.Wow.Wow.Wow.Wow.Wow.Wow.Wow. This is an amazing piece. I love you all so much! Sam- your parents are the best thing ever!

  2. I think Anne pretty much said it all. Wow. What an incredible journey you have all been on. I know it's far from over, but what a blessing to be able to blog about so many of these "normal" toddler days. Love you guys.

  3. It sounds like Sam will be doing most of the talking on his next Skype date with his long-distance girlfriend! Much love to all of you!

  4. Whoa that was a fast sequence of (verbal) events! Lucy can flit her eyelashes as Sam talks to her. I cant believe how big he's getting; he looks like a little boy now. So cute. Miss and love you guys.

  5. Fantastic! I think you also need to write a book...and I bet yours would sell!!! Xoxoxo

  6. So adorable and sweet! I love the videos! Miss and love you guys!

  7. This was such a pleasure to read! Sam has such wonder-parents -- you guys are an amazing inspiration! So great to see him all smiles after such a crazy year. Lots of love you all. Please blow some kisses to Sam from his Auntie Naysh.

  8. Oh. My. Goodness. What a fantastic few months it has been since you last posted. Happy Belated Birthday, Sam! So very happy he continues to do well. Continuing to pray that all goes well with his little heart, and praising God that this year's EEG is normal. What a blessing. NKL

    1. The video of Sam made my day to the point that I missed my exit on Lake Shore Dr. while daydreaming about wonderful Sam. Penny

  9. So glad to hear things are still going so well. You're all in my prayers as always!

  10. I just reconnected to your site via Christine Archer-Davison's blog regarding her travels in China. What a journey parenting is, especially when it is not what we had planned it would be. I admire both of you for your strength during Sam's life thus far and your pregnancy. Jason - one would never imagine your home life challenges when I see you daily. You can both be certain that you are better parents than you thought you would ever be because you truly realize and cherish the gift of life every single day. Those that surround you admire you for your dedication to the journey of parenting.