I just stumbled across what I think is the final installment of my long-ago posts called The Will Chronicles. And thought I'd share it.
It was interesting to read this piece, nearly two years removed from writing it and six years removed from living it. Seems so long ago. Seems like yesterday.
~~~~~~~~~~
Time May Change Me/But I Can't Trace Time
Come gather 'round people
Wherever you roam
And admit that the waters
Around you have grown
And accept it that soon
You'll be drenched to the bone.
If your time to you
Is worth savin'
Then you better start swimmin'
Or you'll sink like a stone
For the times they are a-changin'
~ Bob Dylan
Once Will was born, the times, for me, as a person and as a mother, had indeed changed. Constantly. Unpredictably. Markedly. Moments marched on, marking the days, weeks, months of Will’s stay in the NICU. Thanksgiving, Christmas, New Years came, were acknowledged, went. We rang in the advent of 2002 with apple juice along with other parents and hospital personnel in quiet celebration so as not to wake our sleeping darlings.
But... the more things stayed the same, the more they changed in Will’s world. And he knew nothing else but change.
Some days, there was no news -- which was always good news.
Some days, there was so-so news, with information about a necessary procedure or blip on the proverbial radar screen.
Some days, there was great news about weight gain or a clear chest X-ray or decrease in medication.
I was never able to completely and solidly rest in any of this information, for it could turn on a dime. While I was never complacent, I was never completely comfortable either. Coming face to face with the mortality of one’s child has an unsettling and lingering effect on a parent. That other shoe hung perilously on the tips of my toes, waiting to drop at any moment.
Still does.
Every night, I check on Will as he sleeps, even to this day, holding my hand lightly on his back to feel for the gentle rise and fall of his breathing. And any change in his demeanor or good health -- fever, runny nose, cough-- instantly makes me clench inside. For while it’s usually symptomatic of normal, regular childhood stuff, there’s always a chance that it’s a precursor to something more serious. A recent upset tummy sent us racing to the Emergency Room, as that is a first sign of a shunt malfunction. False alarm -- just a stomach bug. Who knew?
It’s still hard to determine what’s a regular kid issue or what’s a uniquely (and more serious) Will issue -- I sometimes feel like the quarterback in the game of Will’s life, often making a play change based on what I see on the field while the clock ticks down.
Normal is indeed all relative.
While my life as the mother of a NICU baby was the product of One Big-Ass Change, it was the little things that stealthily made their way into my life fabric -- things I never even considered before...
...I became a devotee of hand cream (L’Occitane Shea Butter -- nothing better), as the three-minute washings with Super Hospital Soap and the Nifty Scrub Brush required before entering Will’s room wrecked havoc on my skin. And, as a Woman of a Certain Age, it's become a necessity.
...I took to wearing button-down shirts, in the event that it would be a day where Will and I could have some Kangaroo time and he could snuggle on my chest. Like the Girl Scouts say -- always be prepared...
...I knew what days would be good ones to eat in the cafeteria, having become all too familiar with the menu rotation (stay away from the Cream of Broccoli soup...)
My husband and I became amateur, more-than-slightly overinvested neonatologists. Infections, breathing issues, low heart rate, head taps -- all prime topics of conversation. As time progressed, we were able to analyze the numbers and actions on the monitor that kept track of Will’s most vital signs. We knew when an IV tube was not working properly, and how to re-set the timer that regulated the flow of medicine. We read X-rays, assessed blood test results, and evaluated medicinal reports. Much of this we picked up by osmosis, simply by being attuned to our environment and asking questions of absolutely everyone. But we also acquired information on our own (Google is my life-long friend) so that we could not only understand what was happening to our child, but also so we could be the best possible advocates for him.
My world had shrunk to a microcosm of its former self. Everything rose, set, ebbed and flowed within that bunker tucked inside the hospital. Our neighbors, comrades, supporters were the parents of Will’s roommates; we got to know one another through the experiences of our children. We spoke the same language, felt the same emotions, understood the same thoughts. Not that the other people in our lives weren't important -- because they were. They helped to keep us grounded. But these bonds -- the ones formed over isolettes or in the breast pumping room -- were those that were created from a common, shared experience. We were all walking the same mile in the same shoes, albeit perhaps on different routes.
Our prayers soon expanded to include the needs of Will’s friends and their parents. It was actually a liberating experience when we were able to focus on the needs of others, in addition to our own. Progress forward.
But for every little milestone we celebrated, every blessing we received, every success we cheered, there was always something to remind us to never take anything for granted. Out of the blue, right after the turn of the year, we received a very sobering reminder of just how precious and delicate life can be, as one of Will’s little roommates passed away. He too had experienced so many of the ups and downs that Will had, due to his own precarious health situation.
So many mixed emotions accompany such a tragedy -- heartache for the family; sobering realization that there but for the grace of God go I; guilt that my child is surviving. I wish I could say that this was a unique situation, an isolated incident -- but it wasn’t. And it sucks. Big time. Parents should never outlive their children. My little brush with Will’s mortality was as much of a taste of that as I ever want.
But damned if I still don’t remember every bitter nuance of what it does taste like.
Yuck.
Ptooey.
Never underestimate a mother’s sense memory. Even a hypothetical one.
And that is a permanent change. That I can never shake. No matter how hard I try.
Motherhood has a very humanizing effect. Everything gets reduced to essentials.
~ Meryl Streep
Showing posts with label The Will Chronicles. Show all posts
Showing posts with label The Will Chronicles. Show all posts
4.12.2008
6.18.2006
Mother and Child Reunion
My Gainesville boy Tom Petty said it best:
The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part
Man, did he have a point.
The most difficult part about Will’s way-too-close brush with mortality was the plain not knowing what would come next. (Ah -- see. “Mortality.” Back to those euphemistic words I took shelter in...) While his condition never deteriorated to that of the lowest of lows, he did have his moments of descent. Oxygen saturation was on a virtual trampoline, bouncing up and down, often with no rhyme, reason or logical explanation, other than the fact that Will didn’t like the position in which he had been placed, and his dropping sats were indication of his displeasure. Too much drama. Just like his mother. Infections were detected and treated. X-rays taken, issues noted, medicine administered.
He began to take breast milk as nourishment, which was a blessing and a curse. Due to my early delivery, my body never really figured out the whole “I’m a Mother!” thing, and pumping breast milk became a mighty challenge. Let’s just say that I was able to provide quality rather than quantity. And that just compounded my already rampant feelings of maternal inadequacy. Other than the fact that I did remember giving birth, there really was no tangible indicator that I was indeed a mother. Save for the feelings in my heart and the yearning of my soul. But that, while important, seemed to be woefully insufficient.
Neurological issues became the topics of the day. Will’s early head trauma and subsequent seizure activity were the focus of many doctors and other medical personnel. He began to have his head tapped, to alleviate the fluid buildup and pressure in the brain. Initially scary, that too just became part of the status quo, the routine, the necessary.
Days turned into weeks. Thanksgiving came and went. Our blessings, though sometimes hard to see, were indeed plentiful. And we did give thanks, for the road traveled thus far, and for traveling mercies provided as we forged ahead.
Will’s condition settled into an ebb and flow, with critical danger seemingly behind us. My husband began to travel again for work, which was another blessing/curse. It was good that Will was indeed stable enough for him to get back on the job, but it left me feeling somewhat alone and vulnerable. I know that it was hard on my husband to leave his family, but this introduction of the real world into our surreal world was a jarring experience for me, as I followed the hospital routine alone, flinching every time the phone rang, listlessly trying to sleep while my mind raced incessantly.
However, with time progressing, so did my opportunities to exercise some small material abilities. I began to change a diaper or two, reaching my hands through little portholes in Will’s isolet. I quickly learned the tricks of changing a boy once Dead-Eye Dick hit me straight in the forehead with a stream of wee-wee. We held hands -- actually, he held my pinky finger. Sheer bliss. And I was able to find him some clothes that weren’t great, but weren’t the doll clothes that other preemies often sported. So handsome.
And then, one nondescript morning, in early December, as I was doing something mundane around the house, the phone rang. It was Will’s day nurse. Telling me that he was having a particularly good morning and asking if I would like to come down and hold him. Talk about a rhetorical question.
The sun instantly shone brighter.
The birds sang just a little sweeter.
The sky was just a little bluer.
The part of me that had withered away began to spring ever-so-slightly back to life.
I was going to hold my baby.
For the very first time.
And the world was, just for a moment, a wondrous place.
My e-mail diary for that day could hardly do justice to my joy and excitement:
Will and I were able to spend real time together today, as I held him for the first time! We are beginning what is called Kangaroo Care – which basically involves a parent holding the baby outside the isolet for a short period of time. Will was placed on the top part of my chest, so we could have skin-to-skin contact. In this position, he was able to snuggle in and get comfortable, as he listened to my breathing and heartbeat – much as he did in utero. This activity has shown to be extremely beneficial to babies, as it helps with their physical and developmental well-being. I believe it’s a toss-up as to who loved our snuggle time more – Will or me… I don’t think I will ever forget that moment when his nurse put him in my arms for the first time. I found myself singing to him as we rocked together, and I discovered that the only songs I could remember all the words to were praise choruses, show tunes, and University of Florida fight songs – Will was treated to a medley of Jesus Loves Me, Before the Parade Passes By, Seasons of Love and We Are The Boys from Old Florida – eclectic, but fantastically representative of his mother.
It had been nearly six weeks since I had given birth.
But on that day, I became a mama.
The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part
Man, did he have a point.
The most difficult part about Will’s way-too-close brush with mortality was the plain not knowing what would come next. (Ah -- see. “Mortality.” Back to those euphemistic words I took shelter in...) While his condition never deteriorated to that of the lowest of lows, he did have his moments of descent. Oxygen saturation was on a virtual trampoline, bouncing up and down, often with no rhyme, reason or logical explanation, other than the fact that Will didn’t like the position in which he had been placed, and his dropping sats were indication of his displeasure. Too much drama. Just like his mother. Infections were detected and treated. X-rays taken, issues noted, medicine administered.
He began to take breast milk as nourishment, which was a blessing and a curse. Due to my early delivery, my body never really figured out the whole “I’m a Mother!” thing, and pumping breast milk became a mighty challenge. Let’s just say that I was able to provide quality rather than quantity. And that just compounded my already rampant feelings of maternal inadequacy. Other than the fact that I did remember giving birth, there really was no tangible indicator that I was indeed a mother. Save for the feelings in my heart and the yearning of my soul. But that, while important, seemed to be woefully insufficient.
Neurological issues became the topics of the day. Will’s early head trauma and subsequent seizure activity were the focus of many doctors and other medical personnel. He began to have his head tapped, to alleviate the fluid buildup and pressure in the brain. Initially scary, that too just became part of the status quo, the routine, the necessary.
Days turned into weeks. Thanksgiving came and went. Our blessings, though sometimes hard to see, were indeed plentiful. And we did give thanks, for the road traveled thus far, and for traveling mercies provided as we forged ahead.
Will’s condition settled into an ebb and flow, with critical danger seemingly behind us. My husband began to travel again for work, which was another blessing/curse. It was good that Will was indeed stable enough for him to get back on the job, but it left me feeling somewhat alone and vulnerable. I know that it was hard on my husband to leave his family, but this introduction of the real world into our surreal world was a jarring experience for me, as I followed the hospital routine alone, flinching every time the phone rang, listlessly trying to sleep while my mind raced incessantly.
However, with time progressing, so did my opportunities to exercise some small material abilities. I began to change a diaper or two, reaching my hands through little portholes in Will’s isolet. I quickly learned the tricks of changing a boy once Dead-Eye Dick hit me straight in the forehead with a stream of wee-wee. We held hands -- actually, he held my pinky finger. Sheer bliss. And I was able to find him some clothes that weren’t great, but weren’t the doll clothes that other preemies often sported. So handsome.
And then, one nondescript morning, in early December, as I was doing something mundane around the house, the phone rang. It was Will’s day nurse. Telling me that he was having a particularly good morning and asking if I would like to come down and hold him. Talk about a rhetorical question.
The sun instantly shone brighter.
The birds sang just a little sweeter.
The sky was just a little bluer.
The part of me that had withered away began to spring ever-so-slightly back to life.
I was going to hold my baby.
For the very first time.
And the world was, just for a moment, a wondrous place.
My e-mail diary for that day could hardly do justice to my joy and excitement:
Will and I were able to spend real time together today, as I held him for the first time! We are beginning what is called Kangaroo Care – which basically involves a parent holding the baby outside the isolet for a short period of time. Will was placed on the top part of my chest, so we could have skin-to-skin contact. In this position, he was able to snuggle in and get comfortable, as he listened to my breathing and heartbeat – much as he did in utero. This activity has shown to be extremely beneficial to babies, as it helps with their physical and developmental well-being. I believe it’s a toss-up as to who loved our snuggle time more – Will or me… I don’t think I will ever forget that moment when his nurse put him in my arms for the first time. I found myself singing to him as we rocked together, and I discovered that the only songs I could remember all the words to were praise choruses, show tunes, and University of Florida fight songs – Will was treated to a medley of Jesus Loves Me, Before the Parade Passes By, Seasons of Love and We Are The Boys from Old Florida – eclectic, but fantastically representative of his mother.
It had been nearly six weeks since I had given birth.
But on that day, I became a mama.
6.10.2006
Aba Daba Damn Honeymoon
Mortality /Weighs heavily on me like unwilling sleep.
- John Keats
There’s a name for it. A nickname if you will. Deemed thusly so by the wise, world-weary souls who have chosen as their life’s work to care for premature, critically ill babies.
They call it the honeymoon period.
It’s just like what it sounds like -- a time of indeterminate length when all is going well, when outlooks are rosy, when optimism abounds as one watches the health and the process of a micro-preemie. Which is what Will was.
And he had a lovely honeymoon period. Nines on his APGAR scores. (Educational Minute: The Apgar test is the very first test given to a baby, in the delivery room, right after he is born. The test was designed to quickly evaluate a newborn's physical condition after delivery and to determine any immediate need for extra medical or emergency care. APGAR: Activity, Pulse, Grimace, Appearance, and Respiration. The scale is from 1-10, with 10 being the highest. Rumor has it that only doctors’ children receive 10s.)
His heart valve closed appropriately, his jaundice dissipated. Things seemed to be going very well.
I was still in the hospital, feeling ok, but under close watch more for stress than anything. I watched football from my hospital bed, cheering as loudly as one can do in such an environment for my Gators (who beat Georgia) and my Bucs (who beat Minnesota). My husband rarely left my side, sleeping on an army-issue cot that provided nothing in the way of comfort. We had just come back to the room after a quick little Sunday night visit with Will when the phone rang. It was Will’s night nurse. And there was a problem.
Some pulmonary bleeding had made its presence known. Indicating the very real possibility of a bigger problem. In the brain.
Back we went, unsure of what we would be told. And after a brief consultation with the very young, exceedingly laid-back-to-a-fault on-call resident, we still had more questions than answers. All he could, or would tell us is that “the problem is very concerning.”
What the fuck does that mean, Dr. Dude?
“Very concerning.” That’s some real technical mumbo-jumbo there, fella.
Once Dr. Dude left, the nurse explained to us that this sort of thing -- some apparent brain hemorrhaging and bleeding -- was not uncommon in micro-preemies, and that tests would be run in the morning to determine exactly what was going on.
I was released from the hospital the next day, still wearing my maternity clothes, still questioning everything.
I began to develop the routine that would dominate my life for the next three months.
Wake up. Check the clock. Wait until 7:01 to call the hospital, the earliest possible moment after shift change from night to day staff. Find out how Will’s night was. Inquire when rounds were being held (no visitors, including parents, were allowed in the NICU until rounds were complete). Busy self with mindless activities. Try to figure out how to use the electric breast pump machine. Shower, drive to hospital. Spend time with Will. Chat with nurses, respiratory technicians, other parents. Talk to doctors, physicians' assistants and specialists. Fruitlessly resist urge to cry too much. Work hard to focus and process what was said about Will and his treatment. Leave before shift change (again, no visitors allowed). Go home. Remember to eat something. Stare at the TV. Do battle again with the breast pump machine. Call the hospital before going to bed. Try to sleep. Wake up to go to the bathroom and call the hospital again. Try to sleep again. Wake up. Repeat.
As the week progressed, Will began to ride the Preemie Express Rollercoaster, with good stability one day and problems the next. Tests were administered -- many CT scans -- to see what was happening in that noggin of his. Chest x-rays showed some issues with his little lungs. Infections began to pop up spontaneously.
The honeymoon was over.
After several days of tests and observations, the doctors called us in for a meeting. Will had indeed suffered a brain bleed, and a pretty severe one at that. He had the beginnings of chronic fluid build up in the brain and subsequent seizure activity and tendencies. And there was no way to tell what affect or turns this would have in the immediate and in the long term.
I wish I could tell you exactly what my reaction was, but exhaustion and sheer emotional numbness masked whatever it may have been. Not such a bad thing in hindsight.
We heard all the rhetoric, delivered in a very well-meaning fashion. I don’t want to downplay that. But to the doctors, caring as they were, Will was one of many patients. To me, he was the most important person in that room. And this horrible thing was happening to him. And that was inexcusable and incomprehensible in my eyes. My heart still aches with the memory.
Up and down, up and down we went over the next week and a half. Good days, tough days, oxygen problems, infections, electrolyte issues, cloudy chest x-rays. Stable. Not stable. Seizures, duress, agitation, irritation.
And all I could do was watch him through the Plexiglas of his isolet.
My dearest friend, my college roommate and not-blood-but-should-be sister came to visit from Atlanta for two days during all this, just to hold my hand. Such a welcome respite from the insanity.
She had just left for the airport when the phone rang. Will’s nurse. We were needed for a meeting with his neonatologist. Immediately. That’s never good. And it wasn’t. At all.
To this day, I cannot talk about this moment with any clarity or objectivity. Here are the words I wrote, miraculously, in an e-mail that afternoon.
Sun, 11 Nov 2001
This is a hard one to write, so bear with us. Will seems to be taking a southward turn again. More problems with his oxygen. The doctor suspects that some of this problematic activity may be attributable to seizures caused by his brain hemorrhage. They have been giving him a sedative/anti-convulsant, which settled him down initially, but they have had to continually increase the dosage. He is now having obvious seizure activity.
They will watch him over the next few days to see if his condition gets better, but if it doesn't, his doctors frankly told us that they may be running out of medical options for treatment.
Please continue in prayer for Will's head and healing.
It is only now, with time and some scar tissue that I can actually acknowledge what happened that day.
Will was in danger of dying.
The world turned black.
And part of me withered away.
Mon, 12 Nov 2001
Will had a decent day today. No seizures last night or today but he had one this evening while his night nurse was giving him his hands-on checkup treatment. Any sort of contact -- even having his diaper changed -- seems to agitate him. They are trying different anti-convulsant medications to see if something will work better for him. Good news on other fronts (he's gained weight--now 860 grams), but his head and his seizures are the obvious main concerns right now. They (and we) will keep watching him and see how he does.
Please pray for his head, and that he can rest peacefully and comfortably.
I remember nothing. I remember everything.
I felt nothing. I felt everything.
Out of control. Beyond my control. No control.
Tue, 13 Nov 2001
Today brought more of the same, I'm afraid. They are giving Will lots of medication for his seizures but he's still having them occasionally. He had a bit of a calm period while we visited him today, which was good to see. A neurologist is visiting him twice a day now and following his condition.
Please keep praying for peace and comfort for him. These are very tough days for us -- almost numbing in their intensity -- and it helps tremendously to know that there are so many who continue to talk to God on Will's behalf.
Breathe. Breathe. Breathe. One foot in front of the other. Words forming. Senses moving. Function. Function. What is normal? Will normal ever come this way again? Will I recognize it if if does?
Wed, 14 Nov 2001
Will had a good day today (and needless to say, so did his parents). His nurses said he was doing better all-around than yesterday. No obvious seizures detected today and his breathing looks better than we've seen it in weeks. Right now he's getting an electroencephalogram (EEG) over a 24-hour period to monitor his brainwaves and seizure activity, so hopefully we'll learn more about how his head is doing. He's back on breast milk so hopefully that will help him with weight gain, as well as build up his immune system to fight any infections. He also has graduated to a larger-size diaper -- it's these kinds of things that make a mother proud!
Finally. Exhale. Deep. Primal. Mournful. Relief. Temporary. Momentary. Real.
The rollercoaster was moving up the track, slowly, very slowly. But it was moving. Not stalled. Not stagnant.
There is so much more to be said about this. I’ve not allowed myself to process anything. Until now. I just couldn’t. Even now, seeing the words I wrote seem like they were composed by someone else.
But as I hear Will in the other room, singing along with The Wiggles and happily playing with his cars, I think that permission can finally be granted to my tortured soul. Can I let go of this melange of twisted emotion that I’ve been clinging to? I hope so.
I hate it.
It hates me.
Guess what? Here's that damn AHA! moment people are always talking about. Clarity via that virtual lightbulb going off.
I survived this horrific episode. Every parent's nightmare. Mortality up close. And way too fucking personal.
I am leaving the door open, so some solace can approach, creeping in quietly. Perhaps catharsis will follow suit, and with it, perhaps some self-forgiveness. Who knows.
It's all I can do to just open the door and wait.
I’m still a little dizzy from the rollercoaster ride.
Even now.
Go figure.
This is the spot where I am mortal.
- Johann Christoph Friedrich von Schiller
- John Keats
There’s a name for it. A nickname if you will. Deemed thusly so by the wise, world-weary souls who have chosen as their life’s work to care for premature, critically ill babies.
They call it the honeymoon period.
It’s just like what it sounds like -- a time of indeterminate length when all is going well, when outlooks are rosy, when optimism abounds as one watches the health and the process of a micro-preemie. Which is what Will was.
And he had a lovely honeymoon period. Nines on his APGAR scores. (Educational Minute: The Apgar test is the very first test given to a baby, in the delivery room, right after he is born. The test was designed to quickly evaluate a newborn's physical condition after delivery and to determine any immediate need for extra medical or emergency care. APGAR: Activity, Pulse, Grimace, Appearance, and Respiration. The scale is from 1-10, with 10 being the highest. Rumor has it that only doctors’ children receive 10s.)
His heart valve closed appropriately, his jaundice dissipated. Things seemed to be going very well.
I was still in the hospital, feeling ok, but under close watch more for stress than anything. I watched football from my hospital bed, cheering as loudly as one can do in such an environment for my Gators (who beat Georgia) and my Bucs (who beat Minnesota). My husband rarely left my side, sleeping on an army-issue cot that provided nothing in the way of comfort. We had just come back to the room after a quick little Sunday night visit with Will when the phone rang. It was Will’s night nurse. And there was a problem.
Some pulmonary bleeding had made its presence known. Indicating the very real possibility of a bigger problem. In the brain.
Back we went, unsure of what we would be told. And after a brief consultation with the very young, exceedingly laid-back-to-a-fault on-call resident, we still had more questions than answers. All he could, or would tell us is that “the problem is very concerning.”
What the fuck does that mean, Dr. Dude?
“Very concerning.” That’s some real technical mumbo-jumbo there, fella.
Once Dr. Dude left, the nurse explained to us that this sort of thing -- some apparent brain hemorrhaging and bleeding -- was not uncommon in micro-preemies, and that tests would be run in the morning to determine exactly what was going on.
I was released from the hospital the next day, still wearing my maternity clothes, still questioning everything.
I began to develop the routine that would dominate my life for the next three months.
Wake up. Check the clock. Wait until 7:01 to call the hospital, the earliest possible moment after shift change from night to day staff. Find out how Will’s night was. Inquire when rounds were being held (no visitors, including parents, were allowed in the NICU until rounds were complete). Busy self with mindless activities. Try to figure out how to use the electric breast pump machine. Shower, drive to hospital. Spend time with Will. Chat with nurses, respiratory technicians, other parents. Talk to doctors, physicians' assistants and specialists. Fruitlessly resist urge to cry too much. Work hard to focus and process what was said about Will and his treatment. Leave before shift change (again, no visitors allowed). Go home. Remember to eat something. Stare at the TV. Do battle again with the breast pump machine. Call the hospital before going to bed. Try to sleep. Wake up to go to the bathroom and call the hospital again. Try to sleep again. Wake up. Repeat.
As the week progressed, Will began to ride the Preemie Express Rollercoaster, with good stability one day and problems the next. Tests were administered -- many CT scans -- to see what was happening in that noggin of his. Chest x-rays showed some issues with his little lungs. Infections began to pop up spontaneously.
The honeymoon was over.
After several days of tests and observations, the doctors called us in for a meeting. Will had indeed suffered a brain bleed, and a pretty severe one at that. He had the beginnings of chronic fluid build up in the brain and subsequent seizure activity and tendencies. And there was no way to tell what affect or turns this would have in the immediate and in the long term.
I wish I could tell you exactly what my reaction was, but exhaustion and sheer emotional numbness masked whatever it may have been. Not such a bad thing in hindsight.
We heard all the rhetoric, delivered in a very well-meaning fashion. I don’t want to downplay that. But to the doctors, caring as they were, Will was one of many patients. To me, he was the most important person in that room. And this horrible thing was happening to him. And that was inexcusable and incomprehensible in my eyes. My heart still aches with the memory.
Up and down, up and down we went over the next week and a half. Good days, tough days, oxygen problems, infections, electrolyte issues, cloudy chest x-rays. Stable. Not stable. Seizures, duress, agitation, irritation.
And all I could do was watch him through the Plexiglas of his isolet.
My dearest friend, my college roommate and not-blood-but-should-be sister came to visit from Atlanta for two days during all this, just to hold my hand. Such a welcome respite from the insanity.
She had just left for the airport when the phone rang. Will’s nurse. We were needed for a meeting with his neonatologist. Immediately. That’s never good. And it wasn’t. At all.
To this day, I cannot talk about this moment with any clarity or objectivity. Here are the words I wrote, miraculously, in an e-mail that afternoon.
Sun, 11 Nov 2001
This is a hard one to write, so bear with us. Will seems to be taking a southward turn again. More problems with his oxygen. The doctor suspects that some of this problematic activity may be attributable to seizures caused by his brain hemorrhage. They have been giving him a sedative/anti-convulsant, which settled him down initially, but they have had to continually increase the dosage. He is now having obvious seizure activity.
They will watch him over the next few days to see if his condition gets better, but if it doesn't, his doctors frankly told us that they may be running out of medical options for treatment.
Please continue in prayer for Will's head and healing.
It is only now, with time and some scar tissue that I can actually acknowledge what happened that day.
Will was in danger of dying.
The world turned black.
And part of me withered away.
Mon, 12 Nov 2001
Will had a decent day today. No seizures last night or today but he had one this evening while his night nurse was giving him his hands-on checkup treatment. Any sort of contact -- even having his diaper changed -- seems to agitate him. They are trying different anti-convulsant medications to see if something will work better for him. Good news on other fronts (he's gained weight--now 860 grams), but his head and his seizures are the obvious main concerns right now. They (and we) will keep watching him and see how he does.
Please pray for his head, and that he can rest peacefully and comfortably.
I remember nothing. I remember everything.
I felt nothing. I felt everything.
Out of control. Beyond my control. No control.
Tue, 13 Nov 2001
Today brought more of the same, I'm afraid. They are giving Will lots of medication for his seizures but he's still having them occasionally. He had a bit of a calm period while we visited him today, which was good to see. A neurologist is visiting him twice a day now and following his condition.
Please keep praying for peace and comfort for him. These are very tough days for us -- almost numbing in their intensity -- and it helps tremendously to know that there are so many who continue to talk to God on Will's behalf.
Breathe. Breathe. Breathe. One foot in front of the other. Words forming. Senses moving. Function. Function. What is normal? Will normal ever come this way again? Will I recognize it if if does?
Wed, 14 Nov 2001
Will had a good day today (and needless to say, so did his parents). His nurses said he was doing better all-around than yesterday. No obvious seizures detected today and his breathing looks better than we've seen it in weeks. Right now he's getting an electroencephalogram (EEG) over a 24-hour period to monitor his brainwaves and seizure activity, so hopefully we'll learn more about how his head is doing. He's back on breast milk so hopefully that will help him with weight gain, as well as build up his immune system to fight any infections. He also has graduated to a larger-size diaper -- it's these kinds of things that make a mother proud!
Finally. Exhale. Deep. Primal. Mournful. Relief. Temporary. Momentary. Real.
The rollercoaster was moving up the track, slowly, very slowly. But it was moving. Not stalled. Not stagnant.
There is so much more to be said about this. I’ve not allowed myself to process anything. Until now. I just couldn’t. Even now, seeing the words I wrote seem like they were composed by someone else.
But as I hear Will in the other room, singing along with The Wiggles and happily playing with his cars, I think that permission can finally be granted to my tortured soul. Can I let go of this melange of twisted emotion that I’ve been clinging to? I hope so.
I hate it.
It hates me.
Guess what? Here's that damn AHA! moment people are always talking about. Clarity via that virtual lightbulb going off.
I survived this horrific episode. Every parent's nightmare. Mortality up close. And way too fucking personal.
I am leaving the door open, so some solace can approach, creeping in quietly. Perhaps catharsis will follow suit, and with it, perhaps some self-forgiveness. Who knows.
It's all I can do to just open the door and wait.
I’m still a little dizzy from the rollercoaster ride.
Even now.
Go figure.
This is the spot where I am mortal.
- Johann Christoph Friedrich von Schiller
6.07.2006
Better Living Through Chemistry
750 grams.
One and a half pounds.
Three apples.
Two good size baking potatoes.
A running shoe.
That’s the equivalent of what my baby weighed when he came flying into the world. 750 grams. A whisper can carry more weight than that.
Nearly five years later, the very thought of that seems somewhat unreal. Almost like it was someone else’s experience. Yet still undeniably mine.
To his credit, Will was in fact a long tall drink of water, coming in at 13 inches long. I can say this, because he’s MY child, but he looked like a little plucked chicken. Cute but odd.
I didn’t actually get to see him for several hours after he was born. He was whisked away through a very official, bunker-esque tunnel that connects our children’s hospital with the standard issue one. Bundled up in his isolet, with monitors and poles and bells and whistles, he had an entourage that would rival any presidential motorcade. By the time I was in recovery, I had seen countless visitors who, thanks to the amazing jungle telegraph that spread our news, dropped golf games and childrens’ parties and Home Depot runs to come and offer their love. As I moved from Totally Stoned to Barely Coherent, my husband, parents and a couple of close family friends has already ventured over to see Will. I held court in recovery, and then in my hospital room, the morphine still numbing my body and my mind. My anesthetized cheeriness was a counterpoint to the sobering faces of people who wanted to offer some support, but had no idea how. My pastor, a dear friend, asked me point blank how I was. I was said to have replied “I’m strangely calm about all this.” Again, the morphine speaketh. Better living through chemistry indeed.
Finally, the revolving door of my room slowed down, the phone stopped ringing briefly. And I was given tentative clearance to go see my baby. “Tentative” was all I needed to hear. Wearing two hospital gowns so as not to moon the whole of two entire hospitals, my husband helped me slide into a wheelchair, and off we went to find the mystery tunnel of connection, finding our way to Will’s home away from home -- the Neonatal Intensive Care Unit (NICU). A daunting unit with a locked security door, we found ourselves in a world so unfamiliar as to be intimidating. Low lights, hushed tones, silent staff, shiny squeeky floors. Babies so tiny that they appeared to be on the verge of breaking under the slightest motion. Machines grinding. IV poles as complex as a family tree. Monitors with flashing lights, chronic beeps and an omnipresent warning system. Rocking chairs. Isolets. Fear. Anxiety. Hope.
Here is where my baby would live for who knew how long. Instead of within me. Without me.
Is it any wonder that I began to cry...
My tears flowed freely as we met with Will’s neonatologist, who kindly tried to explain to us what was going on, what they would be doing for Will, what they were looking for in regards to his progress. My husband, the levelheaded engineer, absorbed it all. I was unable to process a damn thing. Words like ventilator, bilirubin, jaundice, infection were brought up. They meant nothing to me. Oh to have been able to rest in that naiveté.
And then, finally, I saw him. Nestled in between two long tube-like bean bags in a closed dome, complete with portholes, was my baby. My Will. Beneath the IV tubes and monitor leads and ventilator tube and tiny eye mask there was my son. Thrown fresh from the compromised safety of my womb into this mechanical necessity.
I was mesmerized by him, by every feature, by every movement. His little head was covered in black hair. My nose in miniature poked up on top of the vent tube. Tiny fingers moved, shaped as if designed to make beautiful music. And I sat, counting every breath he took, noting every beat of his heart as broadcast by the monitor which documented his every move. My heart filled with joy at the sight of him. My soul resonated with maternal love. My spirit valiantly tried to keep up but was woefully unsuccessful. Its numbness could not be assuaged.
And then it dawned on me. This observation post was as close as I would be able to be to him. Relegated to be on the outside looking in.
I could not hold my child in my arms.
I could not feed him from my breast.
I could not comfort him when he cried.
I was a mother from a distance.
My position had been usurped by hospital personnel, machines and medicine.
As I went back to my hospital room, under the orders of the NICU staff, my eyes spilled over with tears. But I’m still not sure to this day precisely why I was crying or what specifically I was crying for. Could have been for Will. For my husband. For me. For this untenable place that the failure of my body to properly care for my infant son had thrown us all into. Most likely all of the above.
Those were bitter tears -- tears of frustration, of sorrow, of loss, of longing. And I can still see the stains they left on my cheeks to this day.
Welcome to motherhood. Keep your hand inside the car at all times. Make sure your seat belt is securely fastened. Hope you enjoy the ride.
One and a half pounds.
Three apples.
Two good size baking potatoes.
A running shoe.
That’s the equivalent of what my baby weighed when he came flying into the world. 750 grams. A whisper can carry more weight than that.
Nearly five years later, the very thought of that seems somewhat unreal. Almost like it was someone else’s experience. Yet still undeniably mine.
To his credit, Will was in fact a long tall drink of water, coming in at 13 inches long. I can say this, because he’s MY child, but he looked like a little plucked chicken. Cute but odd.
I didn’t actually get to see him for several hours after he was born. He was whisked away through a very official, bunker-esque tunnel that connects our children’s hospital with the standard issue one. Bundled up in his isolet, with monitors and poles and bells and whistles, he had an entourage that would rival any presidential motorcade. By the time I was in recovery, I had seen countless visitors who, thanks to the amazing jungle telegraph that spread our news, dropped golf games and childrens’ parties and Home Depot runs to come and offer their love. As I moved from Totally Stoned to Barely Coherent, my husband, parents and a couple of close family friends has already ventured over to see Will. I held court in recovery, and then in my hospital room, the morphine still numbing my body and my mind. My anesthetized cheeriness was a counterpoint to the sobering faces of people who wanted to offer some support, but had no idea how. My pastor, a dear friend, asked me point blank how I was. I was said to have replied “I’m strangely calm about all this.” Again, the morphine speaketh. Better living through chemistry indeed.
Finally, the revolving door of my room slowed down, the phone stopped ringing briefly. And I was given tentative clearance to go see my baby. “Tentative” was all I needed to hear. Wearing two hospital gowns so as not to moon the whole of two entire hospitals, my husband helped me slide into a wheelchair, and off we went to find the mystery tunnel of connection, finding our way to Will’s home away from home -- the Neonatal Intensive Care Unit (NICU). A daunting unit with a locked security door, we found ourselves in a world so unfamiliar as to be intimidating. Low lights, hushed tones, silent staff, shiny squeeky floors. Babies so tiny that they appeared to be on the verge of breaking under the slightest motion. Machines grinding. IV poles as complex as a family tree. Monitors with flashing lights, chronic beeps and an omnipresent warning system. Rocking chairs. Isolets. Fear. Anxiety. Hope.
Here is where my baby would live for who knew how long. Instead of within me. Without me.
Is it any wonder that I began to cry...
My tears flowed freely as we met with Will’s neonatologist, who kindly tried to explain to us what was going on, what they would be doing for Will, what they were looking for in regards to his progress. My husband, the levelheaded engineer, absorbed it all. I was unable to process a damn thing. Words like ventilator, bilirubin, jaundice, infection were brought up. They meant nothing to me. Oh to have been able to rest in that naiveté.
And then, finally, I saw him. Nestled in between two long tube-like bean bags in a closed dome, complete with portholes, was my baby. My Will. Beneath the IV tubes and monitor leads and ventilator tube and tiny eye mask there was my son. Thrown fresh from the compromised safety of my womb into this mechanical necessity.
I was mesmerized by him, by every feature, by every movement. His little head was covered in black hair. My nose in miniature poked up on top of the vent tube. Tiny fingers moved, shaped as if designed to make beautiful music. And I sat, counting every breath he took, noting every beat of his heart as broadcast by the monitor which documented his every move. My heart filled with joy at the sight of him. My soul resonated with maternal love. My spirit valiantly tried to keep up but was woefully unsuccessful. Its numbness could not be assuaged.
And then it dawned on me. This observation post was as close as I would be able to be to him. Relegated to be on the outside looking in.
I could not hold my child in my arms.
I could not feed him from my breast.
I could not comfort him when he cried.
I was a mother from a distance.
My position had been usurped by hospital personnel, machines and medicine.
As I went back to my hospital room, under the orders of the NICU staff, my eyes spilled over with tears. But I’m still not sure to this day precisely why I was crying or what specifically I was crying for. Could have been for Will. For my husband. For me. For this untenable place that the failure of my body to properly care for my infant son had thrown us all into. Most likely all of the above.
Those were bitter tears -- tears of frustration, of sorrow, of loss, of longing. And I can still see the stains they left on my cheeks to this day.
Welcome to motherhood. Keep your hand inside the car at all times. Make sure your seat belt is securely fastened. Hope you enjoy the ride.
5.30.2006
Shot Out of a Cannon Feet First
It seemed innocuous enough. Just a backache. No big deal. And I could explain exactly how I got it. I had been in Phoenix for a conference, and had schlepped my big old suitcase, overpacked as usual, through airports and baggage claims. Sure, I was pregnant, finishing my second trimester and heading into the home stretch of impending motherhood. But I felt good, and I’m a stubborn-ass-control-freak. If I can do something, I’m going to do it. And so I must have just pulled a little something in my back hauling that bag around.
I was six months pregnant in the fall of 2001 and it was lovely. There were a couple of not-so-normal but nothing-earth-shattering things cluttering the landscape, not the least of which was the discovery of a large fibroid tumor (benign) when I had my first sonogram. Shouldn’t have any negative affect on the baby whatsoever saith the doctors; I was at a high-risk obstetrics practice, due to the fact that I was an “older” first time mother, and I knew they had seen all this before. The baby was a boy (which made my husband unbelievably happy), as evidenced by a clear-as-a-bell sonogram picture. Discussions about names had begun in a very casual manner. I was starting to waddle. Our lamaze classes had been scheduled. I was still craving Wendy’s hamburgers on a daily basis. Standard pregnancy stuff. Frankly, I was more preoccupied with the turmoil sweeping the country after 9/11 -- that wound was still so fresh and dominating. I figured the best was yet to come in my role as a to-be mommy.
And then that backache just wouldn’t go away.
I had meetings after work that week -- I was the president-elect of a women’s volunteer organization (the reason for my conference attendance) and there were plans to make and projects to oversee. As I sat in the living room of a friend for one such meeting mid-week, she commented to me that I didn’t look like I felt well. I thanked her for her concern, chalking it up to being tired from travel and that darn backache. The next evening brought more of the same -- concerned comments from other friends and an increased exhaustion coupled with an aching back.
Finally, Friday came, and we -- my husband and I -- were in the market for a new television set. Opting to take his ancient, shock-absorber-deprived Jeep Cherokee, we ventured out, only to have me ask him to take me home because I just wasn’t feeling well. Rather than a backache, I was beginning to suspect that I had a kidney or bladder infection. That made sense. Pregnant women get those all the time. A call to my OB/GYN’s service connected me with the doctor on call, who suggested I take Tylenol PM and try to get some sleep. Impossible instructions. The pain finally became too much, and we drove down foggy early morning streets to the Emergency Room.
That’s when everything changed. Turned upside down. Inside out.
A quick examination by a very kind on-call nurse determined that it wasn’t a backache or kidney infection or bladder problem. I was in labor, had been for several days, was fully dilated and barring a miracle, would deliver that baby -- my little boy -- very shortly. Way too early. Medical personnel started moving at the speed of light. I watched the color drain out of my husband’s face. The gravity of the situation landed directly onto my chest.
And that’s when I started screaming.
Loud.
Primeval.
Straight from the core of my soul.
Morphine was quickly administered. My husband made frantic phone calls to track down family (my parents and brother) and friends, who came immediately to the hospital, leaving their own families as the sun was coming up. While I was under the benefit of anesthesia, he was not; the presence of loved ones provided his pain relief. As much as they could anyway. It was a losing proposition, trying to asuage the horror of the situation.
What was really terrifying at that moment was the determination of my due date. It had originally been figured that I was about 23 weeks along. The survival rates of babies born that early is practically nonexistent. And the obligatory legal visit from the hospital social worker made that fact very clear. Fortunately for us all, I was in fact two weeks farther along than originally thought, giving the baby better odds. However, I still remember, even through my morphine-tainted memories, that very clinical discussion with the social worker and her, matter-of-factly telling me, a woman scared completely out of her drugged mind, that the chances of my baby boy surviving were minimal at best. It haunts me to this day.
I’m not sure precisely what happened over the next couple of hours; morphine will do that to a girl. I know I was given several medications to try and stop the contractions; to try and develop the baby’s lungs (the primary concern) on warp-speed; to try and manage the seemingly unmanageable. I was hung upside down, and endured a parade of observers assessing my situation. I was strong; the contractions were stronger. The only saving grace was my obsession with the fact that because I had not felt well all week, I had neglected to shave my legs. Which, along with every other part of my anatomy, was on public display. Never mind all that -- I felt compelled to apologize to every. single. person. who came to check on me for my hairy legs. It became the only remotely funny thing in this theatre of the absurd.
Four hours later, my will was no longer enough to stave off the inevitable. My doctor, who lived an hour and a half south of the hospital, was unable to get to the delivery room in time. The doctor in attendance was a resident; I could not have asked for, or received, better care and attention from any practicing physician. As they wheeled me to the delivery room, I was perhaps the calmest civilian there. I saw faces of family and friends overhead, encouraging me, talking to God, providing comfort. My dear, dear friend Judy was there, to give support to her dear friend, my mom. Judy has since passed away after a valiant fight with cancer, but the fact that she is part of this memory is a poignant blessing. Holding hands, my husband and I entered the delivery room, feet first and breech, anticipating everything and understanding nothing.
Once in the delivery room, events happened quickly. One calculated push was all it took to send my baby boy literally flying into the world, as if I’d shot him straight out of a cannon. Capable trained medical hands were there from the right-next-door children’s hospital to tend to him. It was only a matter of seconds before he cried.
Loud.
Primeval.
Straight from the core of his soul.
He was healthy and functioning as normally as a 25-week-gestational-aged baby could. And I breathed solidly for the first time in hours.
We named him for his two grandfathers -- he would be called William, Will for short. Such a prophetic name. And just as quickly as he was launched, Will was whisked away immediately under the protection of machine and man and heavenly father through an underground tunnel to the NeoNatal Intensive Care Unit at the children’s hospital.
And I somehow knew, at that moment, that everything would be all right.
But what I didn’t realize at the time is that all right.
Is always all relative.
I was six months pregnant in the fall of 2001 and it was lovely. There were a couple of not-so-normal but nothing-earth-shattering things cluttering the landscape, not the least of which was the discovery of a large fibroid tumor (benign) when I had my first sonogram. Shouldn’t have any negative affect on the baby whatsoever saith the doctors; I was at a high-risk obstetrics practice, due to the fact that I was an “older” first time mother, and I knew they had seen all this before. The baby was a boy (which made my husband unbelievably happy), as evidenced by a clear-as-a-bell sonogram picture. Discussions about names had begun in a very casual manner. I was starting to waddle. Our lamaze classes had been scheduled. I was still craving Wendy’s hamburgers on a daily basis. Standard pregnancy stuff. Frankly, I was more preoccupied with the turmoil sweeping the country after 9/11 -- that wound was still so fresh and dominating. I figured the best was yet to come in my role as a to-be mommy.
And then that backache just wouldn’t go away.
I had meetings after work that week -- I was the president-elect of a women’s volunteer organization (the reason for my conference attendance) and there were plans to make and projects to oversee. As I sat in the living room of a friend for one such meeting mid-week, she commented to me that I didn’t look like I felt well. I thanked her for her concern, chalking it up to being tired from travel and that darn backache. The next evening brought more of the same -- concerned comments from other friends and an increased exhaustion coupled with an aching back.
Finally, Friday came, and we -- my husband and I -- were in the market for a new television set. Opting to take his ancient, shock-absorber-deprived Jeep Cherokee, we ventured out, only to have me ask him to take me home because I just wasn’t feeling well. Rather than a backache, I was beginning to suspect that I had a kidney or bladder infection. That made sense. Pregnant women get those all the time. A call to my OB/GYN’s service connected me with the doctor on call, who suggested I take Tylenol PM and try to get some sleep. Impossible instructions. The pain finally became too much, and we drove down foggy early morning streets to the Emergency Room.
That’s when everything changed. Turned upside down. Inside out.
A quick examination by a very kind on-call nurse determined that it wasn’t a backache or kidney infection or bladder problem. I was in labor, had been for several days, was fully dilated and barring a miracle, would deliver that baby -- my little boy -- very shortly. Way too early. Medical personnel started moving at the speed of light. I watched the color drain out of my husband’s face. The gravity of the situation landed directly onto my chest.
And that’s when I started screaming.
Loud.
Primeval.
Straight from the core of my soul.
Morphine was quickly administered. My husband made frantic phone calls to track down family (my parents and brother) and friends, who came immediately to the hospital, leaving their own families as the sun was coming up. While I was under the benefit of anesthesia, he was not; the presence of loved ones provided his pain relief. As much as they could anyway. It was a losing proposition, trying to asuage the horror of the situation.
What was really terrifying at that moment was the determination of my due date. It had originally been figured that I was about 23 weeks along. The survival rates of babies born that early is practically nonexistent. And the obligatory legal visit from the hospital social worker made that fact very clear. Fortunately for us all, I was in fact two weeks farther along than originally thought, giving the baby better odds. However, I still remember, even through my morphine-tainted memories, that very clinical discussion with the social worker and her, matter-of-factly telling me, a woman scared completely out of her drugged mind, that the chances of my baby boy surviving were minimal at best. It haunts me to this day.
I’m not sure precisely what happened over the next couple of hours; morphine will do that to a girl. I know I was given several medications to try and stop the contractions; to try and develop the baby’s lungs (the primary concern) on warp-speed; to try and manage the seemingly unmanageable. I was hung upside down, and endured a parade of observers assessing my situation. I was strong; the contractions were stronger. The only saving grace was my obsession with the fact that because I had not felt well all week, I had neglected to shave my legs. Which, along with every other part of my anatomy, was on public display. Never mind all that -- I felt compelled to apologize to every. single. person. who came to check on me for my hairy legs. It became the only remotely funny thing in this theatre of the absurd.
Four hours later, my will was no longer enough to stave off the inevitable. My doctor, who lived an hour and a half south of the hospital, was unable to get to the delivery room in time. The doctor in attendance was a resident; I could not have asked for, or received, better care and attention from any practicing physician. As they wheeled me to the delivery room, I was perhaps the calmest civilian there. I saw faces of family and friends overhead, encouraging me, talking to God, providing comfort. My dear, dear friend Judy was there, to give support to her dear friend, my mom. Judy has since passed away after a valiant fight with cancer, but the fact that she is part of this memory is a poignant blessing. Holding hands, my husband and I entered the delivery room, feet first and breech, anticipating everything and understanding nothing.
Once in the delivery room, events happened quickly. One calculated push was all it took to send my baby boy literally flying into the world, as if I’d shot him straight out of a cannon. Capable trained medical hands were there from the right-next-door children’s hospital to tend to him. It was only a matter of seconds before he cried.
Loud.
Primeval.
Straight from the core of his soul.
He was healthy and functioning as normally as a 25-week-gestational-aged baby could. And I breathed solidly for the first time in hours.
We named him for his two grandfathers -- he would be called William, Will for short. Such a prophetic name. And just as quickly as he was launched, Will was whisked away immediately under the protection of machine and man and heavenly father through an underground tunnel to the NeoNatal Intensive Care Unit at the children’s hospital.
And I somehow knew, at that moment, that everything would be all right.
But what I didn’t realize at the time is that all right.
Is always all relative.
5.29.2006
Time to Tell the Tale
I ran into an acquaintance of my mother’s the other day in the grocery store. Not an unusual occurrence in our community, where both my mother and I were born, and therefore just know people simply because we’ve lived here so damn long. She asked me how “that son of yours is doing," commenting that she followed his early days of life thanks to a e-mail chain that sprung up from my daily little missives to close friends and family apprising them of Will’s condition. My e-mails ended up having a greater circulation rate than some small town newspapers, and while that still boggles my mind, it always makes me feel humble and grateful to know that so many people cared enough about my family to share this information and our simple, yet direct requests for prayers on Will’s behalf during his hospital stay in the NICU. I have no doubt that he is where he is today thanks to the power of prayer, the wonders of modern medicine and the capacity for caring of many, many people.
This little grocery store encounter got me thinking about what I call “Will’s story." It’s been a while since I’ve visited it. I mused upon this during my morning walks over the last couple of days, taking the occasion to gauge my emotional reaction to thinking objectively about it. I've been a long time coming to this place. It's only been recently that I've been able to read my e-mail journal, finding the documentation of Will's ups and downs, particularly the weekend when we didn't know whether he would in fact survive, too much to process and handle. For the longest time, I couldn’t watch any medical show on television, fictional (aka ER) or reality (you name it). Too painful, too close to home. Too many memories. Things are better now -- I’m currently addicted to House, although I swear that at least every other patient of the week on that show ends up having some sort of seizure (which I’m all too familiar with). And if that patient is a child or young person, I find that it’s still a little hard to watch, fictional aspect notwithstanding. It’s still tough for me to see any sort of neurological procedure (how ‘bout that drill!) shown on a tv drama -- although if I put my mind to it, I could probably tell you just how close to reality they are (again, that all too familiar thing...)
I may be in a place, finally, where I can write about this life-altering, life-giving experience, for which I was completely unprepared, yet immediately thrown into without my consent. One doesn’t make a middle-of-the-night emergency room visit at 25 weeks pregnant, suffering from an excruciating backache, only to have a nurse tell her that she is fully dilated and will deliver her baby an entire trimester early into unknown circumstances and not come out a transformed individual. Can’t happen. Didn’t happen.
I would be lying if I said that I didn’t wrestle with a big old passel of guilt about Will’s premature birth, despite what the words of the doctors say and the protestations of family and friends. I can’t shake the fact that it was my body that failed my baby, causing him to come into this world way too soon, forcing him to be more courageous and resisiliant and willful than any human should have to be, asking him to endure unknown, untold problems, obstacles, pain. Every achievement and milestone is gloriously bittersweet, always celebrated and encourgaged -- yet constantly swathed in the haze of "what if?" and "why?" and "what will be?"
He is a modern miracle. I believe it. Doctors have confirmed it.
"Wow," they say upon hearing my Cliff-Notes version of his health history. "He looks so great/is doing so well/is an amazing success story. You must be very proud." Proud? Sure. I'll take proud. It beats the hell out of the deepest, darkest, most self-deprecating things I usually think when medical reality usurps my parental pollyanna rose-colored glasses and jacks up the always-simmering-under-the-surface guilt. Wow indeed. (Hmm. Not sure I'm ready to go here just yet. Can you tell? This one's gonna be tough...)
Writing has always been my catharsis, my way of exorcising demons and finding clarity. I think that I’m ready to begin this process with Will’s story. I owe it to my son to get his tale on paper, before the details -- good, bad, happy, sad and yes, funny -- slip away.
But mostly, I owe it to myself.
It’s time.
This little grocery store encounter got me thinking about what I call “Will’s story." It’s been a while since I’ve visited it. I mused upon this during my morning walks over the last couple of days, taking the occasion to gauge my emotional reaction to thinking objectively about it. I've been a long time coming to this place. It's only been recently that I've been able to read my e-mail journal, finding the documentation of Will's ups and downs, particularly the weekend when we didn't know whether he would in fact survive, too much to process and handle. For the longest time, I couldn’t watch any medical show on television, fictional (aka ER) or reality (you name it). Too painful, too close to home. Too many memories. Things are better now -- I’m currently addicted to House, although I swear that at least every other patient of the week on that show ends up having some sort of seizure (which I’m all too familiar with). And if that patient is a child or young person, I find that it’s still a little hard to watch, fictional aspect notwithstanding. It’s still tough for me to see any sort of neurological procedure (how ‘bout that drill!) shown on a tv drama -- although if I put my mind to it, I could probably tell you just how close to reality they are (again, that all too familiar thing...)
I may be in a place, finally, where I can write about this life-altering, life-giving experience, for which I was completely unprepared, yet immediately thrown into without my consent. One doesn’t make a middle-of-the-night emergency room visit at 25 weeks pregnant, suffering from an excruciating backache, only to have a nurse tell her that she is fully dilated and will deliver her baby an entire trimester early into unknown circumstances and not come out a transformed individual. Can’t happen. Didn’t happen.
I would be lying if I said that I didn’t wrestle with a big old passel of guilt about Will’s premature birth, despite what the words of the doctors say and the protestations of family and friends. I can’t shake the fact that it was my body that failed my baby, causing him to come into this world way too soon, forcing him to be more courageous and resisiliant and willful than any human should have to be, asking him to endure unknown, untold problems, obstacles, pain. Every achievement and milestone is gloriously bittersweet, always celebrated and encourgaged -- yet constantly swathed in the haze of "what if?" and "why?" and "what will be?"
He is a modern miracle. I believe it. Doctors have confirmed it.
"Wow," they say upon hearing my Cliff-Notes version of his health history. "He looks so great/is doing so well/is an amazing success story. You must be very proud." Proud? Sure. I'll take proud. It beats the hell out of the deepest, darkest, most self-deprecating things I usually think when medical reality usurps my parental pollyanna rose-colored glasses and jacks up the always-simmering-under-the-surface guilt. Wow indeed. (Hmm. Not sure I'm ready to go here just yet. Can you tell? This one's gonna be tough...)
Writing has always been my catharsis, my way of exorcising demons and finding clarity. I think that I’m ready to begin this process with Will’s story. I owe it to my son to get his tale on paper, before the details -- good, bad, happy, sad and yes, funny -- slip away.
But mostly, I owe it to myself.
It’s time.
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