Bushwhacking
He settles into the rocking chair opposite us, Liam and I in the thick of a skin-to-skin cuddle. He straightens his hospital whites and clears his throat in a distinctly bad-newsy sort of way.
"So… on the latest ultrasound we could see damage in every part of his brain."
I never know what to say when they tell us things like this. Especially when he is curled up under my chin, his chest rising and falling, mouth open contentedly, catching flies. All making me swell with denial. The doctor continues.
"Based on these results alone, I’d say he should need a tracheostomy to keep from choking on his own secretions. I'd say this would be a baby without much of a future — at least not the kind of future you'd call healthy or happy. A baby with a brain that looks like that shouldn't be able to clear his own throat, and that's not good."
"But he does. We don't understand how, but he does. It's amazing. It's like he's rewiring — we can see that the parts of the brain that have been injured are being walled off, and presumably he's growing around it. He's making new connections — and not just in the brain stem which controls vital signs, but in the cortex, which controls complex movements and thinking. You can tell by the way he squirms."
<Liam gurgles, coos.>
"See? Look at that. He should not be able to do that, to make those sounds, to talk to you like that. In my career I've been wrong a few times about some babies, babies I've said won’t make it. Not often. He's one of the few. I don't want to give you false hope, but let's not base our assumptions on what we see on the screen. Because in this case, what we see on screen doesn't match what we see him doing. Clearly, he wants to be here, and he's going to chart his own course."
<Liam sneezes several times.>
"Wow. You know how complicated it is for the human body to orchestrate a sneeze? Diaphragm, nasal passages, lungs, mouth. That's cortex. This is why we should draw our conclusions from him rather than from the ultrasounds alone."
<Liam yawns.>
<Doctor gestures at us, pleasantly exasperated.>
"From what we see on his brain, he shouldn't be able to do that either. I don't know what else to tell you, other than we'll all just keep supporting and watching him. That's a very industrious little boy you've got there."
We wrap up our chat and the doctor walks away, still shaking his head in wonder.
The pessimist in me grumbles he’s blowing a little sunshine our way to soften the ‘brain damage everywhere’ news. He’s cutting us a break, seeing no point in deflating us with an unmendable truth.
But the doctor is genuinely puzzled, I'm sure of it. In front of us was a man passionate about neonatology, and who is not accustomed to being proven wrong.
Apparently it's not only god who’s a tinkerer. It's my son, too.
+++++++++++++
"You okay here?" says the nurse, peering in around the edge of the curtain. The doctor has just left. "I'm off on break. When you're done cuddling, feel free to put him back in bed, and he'll need a change too. Okay?"
She whishes off cheerfully amid a flurry of beeps. Then it dawns on me: she meant that I'd be doing all that m-m-myself.
It cannot be delayed. I am the Dunkin Donuts baker: time to pump the milk. I tilt myself forward, grimacing, still a bit precious in what's left of my abdomen. Get him settled in the crook of one arm, draping sensor wires in a neat cascade off the end of his feet. Open greenhouse, one side at a time. Sneak him underneath the edge of the roof with one eye on the monitors: oxygen sat fine, heart rate steady, respirations normal. Lay him back in his nest, gingerly retracting my hand from under his clammy, floppy silkiness.
I scrub in again, douse with alcohol. Working through portholes I nudge wires out of the way, collect both feet between index finger and thumb, fold the dirty diaper under itself, wipe, slip the new one in place (ten minutes less to write than to do). Finally, tucked in, my Liam stretches and sighs.
Satisfaction finds both of us in this black hole of bewildered doctors and unfavourable odds and day-by-day mystery. Mamalove through it all, mamalove.


Reader Comments (76)
Amen brother. Here's to befuddling and astounding neonatologists for the rest of his time in the NICU. Mamalove to you all.
You have probably heard this song by Natalie Merchant by now... but what the doctor said reminded me of it... about how they can offer no explanation for what they are seeing, and how he will make his way...
This should be Liam's Theme Song!
"Wonder" by Natalie Merchant
Doctors have come from distant citiesJust to see meStand over my bedDisbelieving what they're seeing
They say I must be one of the wondersOf god's own creationAnd as far as they can see they can offerNo explanation
Newspapers ask intimate questionsWant confessionsThey reach into my headTo steal the glory of my story
They say I must be one of the wondersOf god's own creationAnd as far as they can see they can offerNo explanation
O, I believeFate smiled and destiny...Laughed as she came to my cradle"Know this child will be able."
Laughed as my body she lifted"Know this child will be giftedWith love, with patience and with faith!She'll make her way!"
People see meI'm a challenge to your balanceI'm over your headsHow I confound you and astound youTo know I must be one of the wondersOf god's own creationAnd as far as you can see you can offer meNo explanation
O, I believeFate smiled and destinyLaughed as she came to my cradle"Know this child will be able"
Laughed as she came to my mother"Know this child will not suffer"
Laughed as my body she lifted"Know this child will be giftedWith love, with patience and with faith!She'll make her way."
Liam, I'm sooooo proud of you....FIGHT, FIGHT, FIGHT - you can do this!!!!
This boy refuses to be left out of the adventures he and his brothers will find through the years.
Cheering you guys on from VA.
Keep it coming, Liam.
Your family has made such an impact, not only here from your writing, but on the professionals that are caring for your boys. You all have touched so many lives, and that is profound.
Thanks for the smile on my sleepy face!
Someone forgot to tell the bumblebee.
Oh the places you will go little dude.
This is teh awesome.
and you keep on keeping on Kate. wrap yourself in all those miraculous coos, sighs, sneezes, and yawns.
Remember that there ARE miracles in this world. My youngest is one of them. They told me she would die. That there would be all these things wrong with her - and yet she's PERFECT (well, she has heart issues, but mentally PERFECT).
Here's a story I found when I was researching Olivia's condition:
The Brave Little SoulBy: John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen, why is there suffering in the world?".
God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in peoples hearts". The little soul was confused. "What do you mean", he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.
The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this-it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer-to unlock this love-to create this miracle-for the good of all humanity.
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!
God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.
God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.
Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
That said, my husband now knows who you are and we cheer you on with each new post. You are an amazing woman doing one of the hardest things a mother can do. I can't wait to read the entry when you are bringing home your boys. Liam, he's going somewhere. He's going to bring something to this world, and the world will be a better place for it.
My parents were told that I would have brain damage, but the doctors were unsure how it would affect me. Who knows what I would have been like without the injury, but I was an honours student, am an avid reader, kayaker, horseback rider, etc.
I don't want to blow sunshine, as it sounds like my case was much less serious than Liam's, but with the brain especially sometimes the doctors just don't know what's going to happen.
My heart is with your family that you pull through this.
for mamalove.
You too, Ben and mama.
Love to you and your family, Kate.
ashley
and for the record, you are quite obviously as talented a writer as you are a mother.
The image of you gently placing your precious baby back into his isolette and changing him will be forever etched in my mind. Sweet, tender mamalove.