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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.


Posted on Thursday, May 31, 2007 by Registered Commentersweetsalty kate in | Comments76 Comments

Reader Comments (76)

I wish I could say more. Your spirit and strength awe me, your writing pierces and my wishes for your family to heal are beyond my ability to articulate. Thank you for sharing, your mamalove is inspiring.
May 31, 2007 | Unregistered Commenteramanda
"This is why we should draw our conclusions from him rather than from the ultrasounds alone."

Amen brother. Here's to befuddling and astounding neonatologists for the rest of his time in the NICU. Mamalove to you all.
May 31, 2007 | Unregistered Commentertulip
1 hell of a boy, for sure. 1 hell of a mama.
May 31, 2007 | Unregistered CommenterJason Dufair
amazing. keep on amazing everyone, liam.
May 31, 2007 | Unregistered Commentersusannah
wow. he's quite incredible. but then you knew that already, didn't you.
May 31, 2007 | Unregistered Commenterslouching mom
science and medicine can't explain everything, thankfully. I hope Liam continues to amaze and astound you daily.
May 31, 2007 | Unregistered CommenterRebecca James
Amazing. Thinking of you guys a lot and often!
May 31, 2007 | Unregistered CommenterAllyson
My heart sunk for a moment reading the beginning of this then...it soared. You are incredible! Your boys are incredible, especially little Liam. He is such an amazing little boy.Much love to you Kate.p.s. I hope the chocolate has come in handy. :-)
May 31, 2007 | Unregistered CommenterDoulala
The doctor said: "Clearly, he wants to be here, and he's going to chart his own course."

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."



May 31, 2007 | Unregistered CommenterKaren C.
Oh you fill my heart, Kate. I was terrified at the start of your post but then eased. Thank goodness he continues to defy the odds. Boy he sure sounds like he is strong and growing...you are a superMom. More tomorrow from you, I hope -
May 31, 2007 | Unregistered CommenterJoanna
:) little miracles and big miracles happen all the time ~ am so happy liam is stretching himself up towards your love ... makes my heart smile ...
May 31, 2007 | Unregistered Commenterdaisies
It's the first thing they teach in statistics classes: no enormous study or experience predicts individual outcomes. Or in this case, a beautiful tiny boy, fueled by the love of his parents and his own strong will, wending his way out of the labyrinth. So many good wishes, little ones.
May 31, 2007 | Unregistered Commenteranna
I was terrified too, and then thrilled. What amazing sweetness in cuddling, and thrilling possibiities of the human body. Sending lots of love and positive energy in your direction.
May 31, 2007 | Unregistered CommenterJennifer
It's amazing and terrifying to hear about this little guy charting his own course outside what the doctors can see/understand. Fantastic. Go Liam Go!
May 31, 2007 | Unregistered CommenterJana
You are a wonderful mama....you are always in my thoughts!

Liam, I'm sooooo proud of you....FIGHT, FIGHT, FIGHT - you can do this!!!!
May 31, 2007 | Unregistered CommenterChristine
that is the best freakin' thing i could hear today! thank you for sharing all that you do, kate... your life, your loves, your thoughts, the mysteries, the shit... ALL of it! THIS is not about me... AND, i needed to hear that good is still happening in this crazy world - thank you. :)
Listen to the Mustn'ts,child, Listen to the Don'tsListen to the Shouldn'tsThe Impossibles, the Won'tsListen to the Never Haves,Then listen close to me --Anything can happen, child,Anything can be.Shel Silverstein
May 31, 2007 | Unregistered CommenterLisa George
I love that a group of total strangers comes together every day to share your fear, your grief, your pain, and we smile and cry and are overjoyed when hope rears its beautiful head.I keep coming back here because it's a good place- full of love and peace and little babies.Bless you ALL.
May 31, 2007 | Unregistered Commentermolly
Go Liam!

This boy refuses to be left out of the adventures he and his brothers will find through the years.
May 31, 2007 | Unregistered Commenterkaryn
Here's more mamalove coming your way. I'm sure you have way more than enough. But it's here if you need it.

Cheering you guys on from VA.
May 31, 2007 | Unregistered CommenterMammaLoves
Kate I love the title of your post. Although we are total strangers I continue to be amazed by how well you can detail this journey you are on. I can't even begin to imagine what it is like to be in your shoes but I find strength in the courage that you and your sons are showing. I will continue to think of your family and I will do what I can do in my own little way to send strength to all of you. As I mentioned several posts back miracles do happen just not always the way we are expecting them. Keep looking and enjoying your miracles. K
May 31, 2007 | Unregistered CommenterKSL
rock on, liam! way to astound the big guys- i'll bet you'll still be doing it when you're 90 and climbing everest on your own. you incredible, incredible boy, with an incredible mama. progress! progress! and abundant and life-giving peace to you all.
May 31, 2007 | Unregistered Commenterpnuts mama
Keep the mamalove fueled sneezes, yawns, and other wonderful bodily functions coming! I love that he's rewiring his own brain: Yeah that, that's not working right, here if I do this and that and oh yeah, here it comes...ahchooo! Perfect. Okay. Next?

Keep it coming, Liam.
May 31, 2007 | Unregistered Commenterm
We really don't understand the brain yet do we? I'm hoping Liam will teach these doctors something amazing.
May 31, 2007 | Unregistered Commentertrish
I am not much of a church-going person, and what I deeply believe in does not always match what they talk about in church either, but still, I think it's ok to say there is like a miracle happening around you and your family, no? What else could it be? And how generous of you to share it with us. It feels like Christmas to open your blog and witness such wonder through your words every day.
June 1, 2007 | Unregistered CommenterIsabelle
Isn't it fun to see doctors as real people who are pleased (if confused/surprised) by the way things are going! After his last surgery, my son's cardiac surgeon came in to check on him and made a joke. After he left I had to check with the nurse who was in there with me that I had really heard that stoic man crack a joke. She had heard it too. It is still my favorite memory and the best way of knowing that my son really was doing well. When they are their stoic professional selves it is comforting in a "my child is in good hands" way, but when the human-ness shows through it just completely relaxed me.

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!
June 1, 2007 | Unregistered CommenterKYouell
I know this is an overworked cliche but you do know the bumblebee can't fly? Aerodynamically impossible.

Someone forgot to tell the bumblebee.



June 1, 2007 | Unregistered Commenterann adams
Wow. Just, Wow.

Oh the places you will go little dude.

This is teh awesome.
June 1, 2007 | Unregistered Commenterthordora
he is just showing everyone.hey look at me! I am Liam, not some printout or monitor, but me." you keep on stumping them all little guy.

and you keep on keeping on Kate. wrap yourself in all those miraculous coos, sighs, sneezes, and yawns.
June 1, 2007 | Unregistered Commenterkristin
What Doulala wrote is exactly what I would have.

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.



June 1, 2007 | Unregistered CommenterTricia
I'm new to your blog, been slowly reading back through your archives when I get time (I like to do that when I 'meet' new bloggers, to catch up, as it is)...

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.
June 1, 2007 | Unregistered CommenterPhoenix
At the risk of sounding like a cheerleader, I wanted to let you know that I was one of "those babies" too. I was born with a prolapsed skull fracture from forceps and it required seven hours of surgery at birth for them to pick all the bone fragments from my brain and put my head back together.

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.
June 1, 2007 | Unregistered CommenterAnna
I too thought of the Wonder song when I read this post. Yea Liam! Keep moving forward... mamalove to you all.
June 1, 2007 | Unregistered CommenterRobin
Wow. Bewildering is an apt characterization here in so many ways. I can't help but think - having seen only what you put out here - that you are capable of sorting this out and thriving for your family. Liam, I think, will be the guide, guided by whatever means he is. He is brave and strong and you are too. Thinking of your family often.
June 1, 2007 | Unregistered Commentermar
Just goes to show that each of us has obvious and not so obvious capacity, and none of us should ever be underestimated. Especially with the God-thingy that is out there "tinkering" (as you aptly said). It's a weird journey, this life we go through. It is so easy to get caught up in the "good" life - things being normal and cool and fun, some struggles, but nobody ever expects or welcomes things like this to their lives. It is natural to want only the best for Liam, to feel such apprehension at the murky cloudy, against-the-odds future ahead, but I can tell you, your little Liam is going to make your life richer and richer each day, both for himself as well as for what this experience is teaching you all and how it strengthens you, focuses you, and makes you into a new person.We'll still keep on wishing and praying and hoping he continues to beat all the odds and statistics every day!
June 1, 2007 | Unregistered CommenterTrasi
wow I am just so overcome with emotion-I love what the doctor told you! Thank you for sharing your journey with us. Liam is a beautiful and gentle reminder that magic and miracles surround us.peace and love,Mary
June 1, 2007 | Unregistered Commentermary
My heart dropped too when I read the first part about Liam's ultrasound. As I continued reading I wanted to jump up from my desk and shout "GO LIAM!" Wishing you the best and hope his triumphs continue each day.
June 1, 2007 | Unregistered CommenterAndrea
Well, we've all said how scary the unknown can be, but sometimes the unknown can also be the source of hope.Pulling for your family every day.
June 1, 2007 | Unregistered CommenterJamieLee
tears in my eyes...hope, and joy.

for mamalove.
June 1, 2007 | Unregistered CommenterBon
I too was upset when first reading your post but quickly my eyes filled with happy tears. I'm so thankful that you got to see the wonder and disbelief in the doctor's eyes and so thankful he got to see Liam perform such wonderful tasks. Brave, little Liam....keep fighting baby boy.

You too, Ben and mama.

Love to you and your family, Kate.

ashley
June 1, 2007 | Unregistered Commentertwin chronicles
I'm sitting here at my desk with tears in my eyes because I'm just so happy. I'm happy that God has made your baby a fighter, and you too. I don't know you, and yet you are such an inspiration to me. I think of you often and say prayers for your little ones.Lauren
June 1, 2007 | Unregistered CommenterLauren
Wow. Liam and Ben are two amazing little boys.
June 1, 2007 | Unregistered Commenterselzach
it's so nice to read about a doctor stumped in a good way. too often it's the other way around.

and for the record, you are quite obviously as talented a writer as you are a mother.
June 1, 2007 | Unregistered Commentermoeberg
Good job, Liam! Keep the doctors baffled!
June 1, 2007 | Unregistered CommenterEmmaNadine
Fantastic. Amazing. Wonderful. Extraordinary.
June 1, 2007 | Unregistered CommenterAmy
That is just awe inspiring. What a baby!Keep those doctors guessing Liam! Keep them on their toes!
June 1, 2007 | Unregistered CommenterJessica
Thank you for sharing your amazing story. Liam and Ben bring hope to so many of us, near and far, through your lovely words. May your blessings continue, day by day.
June 1, 2007 | Unregistered CommenterJennifer
I'm de-lurking here to say that I think you're lucky to have that doctor working with Liam. It's rare to have a highly specialized physician admit that what is going on is beyond his scope of knowledge. They often don't acknowledge the mystery of life, of how the brain works. Hooray for the doctor, for you, for precious Liam who keeps beating the odds.
June 1, 2007 | Unregistered CommenterRachel
Whew, I was scared at the beginning of that post but thank God for how it turned out. Liam, you are a miracle child; keep fighting!
June 1, 2007 | Unregistered CommenterAndrea
Despair, sadness, frustration...then joy, wonder, and...HOPE!

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.
June 1, 2007 | Unregistered CommenterYvette

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