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."
Sam flashes himself a coy smile and says, "hi."
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!
ReplyDeleteI 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.
ReplyDeleteIt 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!
ReplyDeleteWhoa 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.
ReplyDeleteFantastic! I think you also need to write a book...and I bet yours would sell!!! Xoxoxo
ReplyDeleteSo adorable and sweet! I love the videos! Miss and love you guys!
ReplyDeleteThis 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.
ReplyDeleteOh. 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
ReplyDeleteThe video of Sam made my day to the point that I missed my exit on Lake Shore Dr. while daydreaming about wonderful Sam. Penny
DeleteSo glad to hear things are still going so well. You're all in my prayers as always!
ReplyDelete-Sabrina
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.
ReplyDelete