Wednesday, August 31, 2011
I stalled getting my two-year old out of his crib this morning to avoid yet another battle at the changing table. Conflict is the latest ritual in place of singing and playing a variation of peek-a-boo called poke-a-Tito (laugh, laugh, laugh) followed by poke-a-mama (laugh some more). Oh the joys of motherhood to see my reflection in my son’s smile. Nothing compares.
I can’t blame Tito. He has an excellent memory, which is why he resists laying down, being changed, and me reaching for the bottle of cherry flavored Maalox (cannot find non-flavored anywhere). Anti-acid designed for heartburn makes for the barrier of choice on the skin around my son’s right eye. It prevents the skin from ripping and bruising when I take off his eye patch two hours later. Otherwise he gets quite the shiner.
As the “no no no” begins I turn laying him back into a game by counting to three, though not in a threatening way like “lay down now or else.” Once on his back next comes the arching and leg kicks. My tricks of offering cars, balls, teddy grahams fail. So I reach for the tape. It works every time. He loves to play with tape, but this morning he does something unexpected with it. After sticking it on his hands and fingers and my arm, he places it strategically on his right eyelids and starts the countdown: 10, 9, 8, 7, 6, 5, 4, 3, 2, 1. Repeat.
I smile. He looks at me and with pride says, “Yeah for Tito.” He gets the concept even if it is the wrong eye. The medical tape goes on the upper and lower left lids to keep that eye open during patching sessions. A combination of the left lids sewn partially shut, a gold weight in the upper lid, and pigskin in the lower lid forces the lids together.
Tito lacks sensation in the left eye and neither blinks nor produces tears properly ever since a brain/skull surgery for his NF1 back in April 2010. By forcing the lids together (five surgeries later), except while patching four hours a day, the left eye stays moist from all the artificial drops and gels and ointments that go into it.
With a change of clothes and diaper, with Maalox on the skin, with tape on the left lids, we start a new day. Once off the changing station I set the timer on the microwave for five minutes. Tito gets to play until the timer beeps. Then it is time to put on the patch of his choice: car, ball, or lizard pattern.
Beep, beep, beep. Now the patch goes on. With the right eye covered I reset the timer, this time for two hours. Before the timer goes off, Tito will get to count down, with much enthusiasm I might say, the final minute: 60, 59, 58, 57 . . . knowing that after naptime the ritual will start all over.
Tuesday, August 30, 2011
In a journal, I have written letters and drawn pictures for my son over the course of his short life. The entries have grown fewer and far between. Writing to my son evokes difficult emotions that seem unbearable. Avoidance becomes another way to numb or deny reality. Since April 13, 2010, the day of Tito’s surgery at Seattle Children’s Hospital, I have made only three entries. Before the big day, I count twenty-three.
I found courage to write to Tito on the day of his surgery:
My dearest son,
Today is your major operation. I feel terrible that you have to suffer because of your NF1. Your surgery of seven hours is to remove a tumor from behind the left eye. Then the surgeons need to repair a portion of your skull due to missing bone. They need to create a barrier between your brain and eye socket. The anesthesiologists took you from my arms at 8:00 am. Then you were gone. I didn’t see you until about 5:00 pm after the operation, CT, and post-op care. All day I could only imagine what was being done to you. I dreaded the thought of them cutting your head open from ear to ear. I dreaded the thought of you bleeding and needing a blood transfusion. I dreaded not recognizing your sweet face afterwards. If only mama had an ounce of your bravery, innocence, and love for life.
I am here for you,
Two days later, April 15, 2010, I started a different journal. I couldn’t write to my son. A strange sensation came over me. It felt as though Tito was disappearing from my life as quickly as he entered it. All I could do was hope that God was real. So I found solace in writing down my prayers.
April 15, 2010 entry:
Lord, I cannot hold my son. I want to cry but have no tears. When tears finally come, I push them back. I grieve. My son is alive, yet I am afraid. I miss his scar free body. I miss the hair on his head. I imagine days without fear. I try to enjoy the sunshine in Seattle and the flowers and the trees. Then my thoughts return to my son in his hospital room. Who am I to enjoy a moment as he lays in ICU? Like trapped animals we both are. All I can say is “God, help.”
Monday, August 29, 2011
The day fear took over, I, a new mother, became obsessed with watching the brown spots forming on my 7 week-old baby’s skin. A year of fear followed.
• March 27, 2009: Tito born with no issues
• April 10: two weeks old; the left eye never closes completely
• May 17: seven weeks old: 7 cafe-au-lait spots appear on his legs and stomach
• May 28: two months old; 14 cafe-au-lait spots noted
• June 17: almost three months old; exam by a geneticist with no clinical
diagnosis of neurofibromatosis given
• July 7: three months old; freckling detected in the right iris
• August 4: four months old; the left eye bulges out of the face; MRI ordered
• August 7: four months old; MRI of head, face, and orbits
• September 3: five months old; exam by a neurosurgeon who orders a CT scan and
then drops Tito’s case
• September 16: five months old; CT scan of head, face, and orbits
• September 30: six months old; exam by neuro-oncologist at Seattle Children’s
Hospital; numerous cafe-au-lait spots cover Tito’s torso, buttocks, and legs
• October 1: six months old: exam by a new ophthalmologist at Seattle Children’s
for protruding left eye
• October 7: six months old: referral made to the craniofacial team at Seattle
• November 2: seven months old: exam by craniofacial plastic surgeon at Seattle
Children’s; left wing of skull bone is missing; diagnosis of neurofibromatosis
type 1 (NF1) given; brain and skull surgery discussed
• December 1: eight months old; vision deteriorating in the left eye; patching
sessions for 30 minutes per day begin
• January 4, 2010: nine months old; CT scan of head, face, and orbits
• February 9: ten months old; MRI of spine, and exam by a geneticist at Seattle
• March 8: eleven months old; patching sessions bumped up to 3 hours per day
• April 13: one year old; brain/skull surgery and MRI at Seattle Children’s
In the pandemonium of uncertainty and testing and second opinions and referrals, I wrote letters to my son. Here’s a journal entry dated July 27, 2009:
My son, Tito, my love,
You are four months old today! So much has happened up to this point. Now you are sitting up in your Bumbo seat. You can pull your toy tiger on your own to get it to play music. You are squealing, trying to talk, and nearly laughing. You protest when I start talking to someone else while nursing you. I’m sorry for not writing to you in several weeks. On July 7th, you went to Dr. Jeffrey Snow, a pediatric ophthalmologist. We were there 2 ½ hours. You cried most of the time. It appears that you have three spots on your right iris called iris nevi. You also have many cafe-au-lait spots on your body. Papi and I worry that you have NF1. No matter what, you are loved beyond measure. We will do whatever we can to give you the best life. NF1 or neurofibromatosis is caused by a gene mutation on chromosome 17. Prayers cover you that you will have a mild form.
I love you very much,
Sunday, August 28, 2011
Today’s post revisits a theme covered previously on people’s reactions to my two-year old son, Tito, when out in public.
My husband, Ernesto, took Tito to the park. All the kids were pointing Tito out to one another. It’s not as if they were being cruel or teasing. But at times the “Oooh, what happened?” statements are just as damaging. We contend with this each time we take Tito places. He will have to deal with it directly as he gets older. For now he is too young to know what is going on, that he looks different.
After one of Tito’s eye surgeries—the fifth one I think but have lost track; the one where the orbital plastic surgeon inserted a gold weight into Tito’s upper left eyelid and injected AlloDerm (pig skin) into the lower eye lid to close the lids—it looked like Tito got socked in the eye with a hard ball. For days when he saw himself in the mirror after bath time, he pointed to his bloody and swollen eye and said, “Owie.” He poked and patted it as if to say, “It’s ok.”
Worse was the reaction of a four year-old boy upon seeing Tito after this particular surgery. Ernesto and I, with volunteers from different churches, serve dinner once a month at our local Ronald McDonald House. The young boy asked me whether Tito got the bonk on his eye from me hitting him, by “giving him a woopin’.” I said no and that Tito had to have surgery. The boy proceeded to tell me that he gets a woopin’ at home on his bottom. The only thing I could think of to say was, “You do?” As the boy’s mother sat zoned out in front of a TV with a man who was not the boy’s father, I wondered how life must be for him.
Since Tito is at risk for being teased and quizzed nonstop once he starts school for looking out of the norm; since he has had several trips to the OR for his left eye; since none of the surgeries have provided a solution to heal the ulcerated cornea; since we have to tape open the left eyelids and put in artificial moisture drops or gel every 10-15 minutes into the left eye while patching his good eye, two questions posed by a specialist new to our son’s case are important to ask: “How much can you put a child through?” and “How much effort should be made to save an eye?”
These are unanswerable questions for me as Tito’s mom. So I will go on answering the one question that can be answered.
“Oooh, what happened?”
Saturday, August 27, 2011
At times, I’m told that worrying changes nothing. It cannot change the facts. It cannot change what will happen. And yet I cannot help but think that the course of my son’s life will be like that of others who suffer from NF1: benign tumors turning malignant, blindness, disfigurement, multiple surgeries, or death.
Fear keeps me from enjoying the good things happening in my son’s life—his remarkable healing after a major brain and skull surgery in April of 2010; improved motor skills and speech; happiness for life; love for people; some vision worth salvaging in the left eye; the generosity of friends, family, and strangers—so rising above fear becomes a necessity even if for a moment.
Transcending fear can be thought of as a spiritual exercise. Drawing close to God and relying on God depend greatly on letting go of self-reliance. It begins with honesty. Admitting and recognizing the extent to which fear dominates my thoughts takes effort and discipline. Throughout Scripture comes the command: “do not be afraid.” With so many ‘fear nots’ in the Bible, these remind me of just how fearful I am.
When fear sets in I notice the absence of peace, joy, patience—pretty much all of the ‘fruit of the Spirit’ mentioned in Galatians 5:22-23. Another benefit in letting go of fear is the chance to experience 1) emotions that get buried like sorrow, anger, and happiness, and 2) remarkable traits like generosity, forbearance, and self-control. A good life depends on these.
Friday, August 26, 2011
Yesterday I posted on what helps in working through my fear in the day-to-day challenges with respect to my son’s tumor condition. Now I speak to what doesn’t work.
To start, I notice the paralyzing effects of fear. It remains unclear to me how much power fear has over me or how much power I give it. Either way, fear gets in the way of having a good day. The inability to focus, to think clearly, to accomplish a task, to make decisions, to form thoughts, to recall words, not wanting to do anything or go on—these features of fear resemble those of grief.
Not long after Tito’s brain and skull surgery, my mom took me on an outing without the baby to pick out some landscaping items for our yard. I was excited to go. Then once at the nursery I lacked the energy to walk around. I was unable to choose which flowers, plants, and trellis I wanted. She took me to several nurseries and the same indecisiveness set in. I returned home with next to nothing.
The experience of being unable to snap myself out of it makes for high levels of frustration. The temptation to numb arises. Brene Brown distinguishes addiction from numbing in The Gifts of Imperfection (see her TED talk on vulnerability). Some people suffer from addiction, but everybody numbs with something. My favorites include wine, chocolate, coffee, maple bars, perfectionism, never stopping, and a compulsion to clean. Numbing has pay offs and costs. The pay off, says Brown, is that numbing “takes the edge off” of experiencing difficult (and good!) emotions (The Gifts, 69-74).
Every pay off come with a cost. Numbing is a short-term solution and can quickly turn into a habit. But more is at stake, as Brown gets the reader to understand: it is only through experiencing painful emotions like shame, fear, and vulnerability that you gain access to a rich life of courage, compassion, and connection.
Aside from numbing, here are a few other things that don’t work:
- trying to look like I have it all together by going into report mode
- withdrawal and isolation (the opposite of solitude and spending time in God’s presence)
- looking to other people to alleviate my fear by sharing with those who want to fix it
- the avoidance of reading and learning about my son’s diagnosis of NF1
- being silenced by physicians who minimize the seriousness of Tito’s condition by saying that it’s nothing to worry about, that the web offers only horror stories of NF1, and who drop Tito’s case without communication
- resisting sleep and rest
So numbing and other strategies—these work for a brief time but postpone the hard work of accepting and working through my fear. Sharing, having a good cry, being honest—these are cathartic, and a good place to begin.
Thursday, August 25, 2011
When confronted with chronic, relentless fear I discover what works and what doesn’t work to cope. The temptation is to numb. I’ll say more on this for tomorrow’s post. In short, numbing simply cannot provide the stamina needed for the journey.
Several activities and bits of wisdom ease my burden of caring for a child with special needs. First, what others say makes a difference. As human beings, I think we easily recollect comments that hurt and comments that inspire. Both make an impact. Here are some things people have said that encourage me in the daily grind of patching, medical appointments, surgeries, therapies, watching for anything out of the ordinary with my son, and dealing with insurance and billing departments (it’s a toss which is worse).
When people say that:
- Tito is so happy
- you can tell he’s loved
- his smile makes your day
- my husband and I are doing all we can
- there’s nothing more we should be doing
- they’ve been through it
Things that work for me in managing fear include:
- having the support of a loving community such as our church
- reading up on my son’s condition
- doctors telling me straight up what is going on without minimizing it
- getting into action as Tito’s advocate
- taking Tito wherever he needs to go, however inconvenient, for the best medical intervention
But the one thing—the chief thing—that I keep coming back to is the importance of cultivating my own interests like academic endeavors, preaching at church, exercise, art, working on another book, gardening, getting together with friends, picking huckleberries . . .
I cannot emphasize enough the satisfaction of keeping with the things I am passionate about. It does feel awkward to spend time on my own pursuits. But I’m convinced that doing so makes me a better person and mom. To make my son’s incurable tumor condition the whole of life is the avoidance of life itself.
Wednesday, August 24, 2011
Worrying more about how I love and raise my son rather than what might happen to him, this is the challenge.
If I cannot completely rid myself of fear, then it must be possible to redirect it. Shifting my worry to that which I can do something about is empowering. I can’t predict my son’s future, though I am often asked about his prognosis. There’s no way of knowing. We take it day by day. I worry, of course, that he may have a serious or fatal form of NF1.
The benefits of redirecting fear outweigh the obstacles to do so. Am I going to get to the end of all these years after my son reaches adulthood and say, did I worry too much then? What did fear get me? Did I push Tito too hard to work on coordination and balance, motor skills, feeding skills, verbal skills, patching, and seeing? Or did I slow down to enjoy the day-to-day moments while Tito was young? Such questions become particularly poignant in light of how fast time goes.
Tuesday, August 23, 2011
Raising a child with a chronic medical condition demands of me a different kind of love. As one friend put it, “I don’t want my daughter to grow up experiencing only sympathetic love.” My friend, whose daughter has Turner syndrome, makes an excellent point that causes me to wonder about the different types of love and how I love my son. Perhaps fear warps unconditional love into sympathetic love, a type of conditional love based on circumstances.
Sympathy means “to feel sorry for,” “to pity,” or “to express understanding.” A separate word, compassion, literally means “with suffering.” Compassion extends far beyond feelings of pity or sorrow for another. Compassion moves a person to engage in relationship. It is being with rather than doing for. For more on the distinction between ‘with’ and ‘for,’ listen to “The Most Important Word” (19 minutes into the video), a Christmas Eve sermon by the Rev. Dr. Samuel Wells delivered at Duke University Chapel.
I recognize the worry that preoccupies my friend. On top of managing her daughter’s health issues, my friend struggles to find answers to questions of love fueled by uncertainty of her daughter’s quality of life. Uncertainty arouses fear. Fear in turn masks vulnerability. But as Brene Brown shares in The Gifts of Imperfection, the path to wholehearted living and love emerges by being authentic and vulnerable. These go against my tendency to pretend, to minimize, to act strong
Mine is a convincing act. People tell me how strong I am. I say, “I’m not strong and I’m not weak. It’s just what I do. I am Tito’s voice.” Much of my time is spent doing for, doing what needs to be done for my son. I have much to learn on how to be with him. For when fearful thoughts set in, I have to fight the urge of putting distance between my son and me.
Monday, August 22, 2011
Day 11 of my 30-day challenge--inspired by a TED talk--to write on fear.
The ability to see is one of those fascinating and complex systems in the human body, one taken mostly for granted.
My blog entry dated January 2, 2010 after a trip to the ophthalmologist reads: “We have to patch the good eye now every day until the baby's surgery in the spring. This is to prevent vision loss. Thank goodness the patching sessions are only 30 minutes. It is nearly impossible to keep the baby from rubbing the eye patches off. The baby can no longer look up with the left eye.”
Ophthalmologists can check for vision loss in infants. An effective method involves teller acuity cards. Holding Tito on my lap, the vision tech covers one of his eyes at a time and holds up a series of rectangular boards. Each board contains a black-and-white pattern of stripes or checkers at one end. The opposite end is blank. The tech hides behind a peephole at the center of the board and looks to see whether the infant can locate the pattern.
Amblyopia, or lazy eye, has many causes. It is a major source of vision loss in children. Tito’s left eye began protruding out of the face when he was 4 months old, causing the brain to shut off vision to that eye. We had yet to learn that Tito had a tumor behind the eye that originated in the cavernous sinus and that he was missing a wing of skull bone designed to keep the brain from entering the eye socket. When Tito was almost 9 months old, an ophthalmologist caught the vision impairment. The daily grind of patching Tito began, and it continues to this day. He’s now up to 4 hours of patching a day.
Some days are tough. We’ve retrained Tito to patch without arm splints (no no's), though he fights the temptation to tear the patch off. Constant redirecting, keeping his hands busy with toys or food, singing, playing, letting him enjoy a sucker or cookie--these are some tricks that help us get through the patching sessions.
The uncertainty of how much Tito sees out of the left eye preoccupies me. Whether patching him hour upon hour is restoring any vision remains to be seen. For now, it is part of our routine. Wake up in the morning, patch. Wake up from his afternoon nap, patch. Every single day. Put eye drops or gel in the left eye every 10-15 minutes while he’s patched so that the eye stays moist.
Patching Tito the other day, I held up a strawberry from my dad’s garden in front of his left eye. Tito leaned forward in his high chair, gazed earnestly in the direction of the strawberry for several moments, and then snatched it from my hand. I knew that he was happy. And I was happy too.
Sunday, August 21, 2011
Thinking of my early childhood and now watching my two-year old, I’ve grown curious about the neurobiological components of fear, specifically the extent to which fear is innate or learned.
My first memory of being afraid was when a large mean dog chased my two siblings and me in our front yard. My sister was five, I was four, and my brother was three. I recall us kids running frantically all over the place, including around the Avon lady’s car in the driveway, as the stray hungry German Shepherd pursued us. We screamed and cried. The dog growled and snarled. My mother flew out the front door yelling, which in turn made the dog run off. It too had a fear response. After that we came inside and did not want to leave our mother’s side. It took awhile for her to console us. Over thirty years later, I remember the details of that scary episode.
It turns out that memory and fear go hand in hand (“Stathmin, a Gene Enriched in the Amygdala, Controls Both Learned and Innate Fear,” 697, 705). Memory of adverse circumstances is essential for survival, thus memories of fearful situations tend to remain throughout an animal’s lifetime (“Stathmin,” 697). Researchers distinguish between ‘acquired’ or conditioned fear learned through adverse experiences and ‘innate’ or unconditioned fear as part of a creature’s genetic makeup. Scientists also note that the amygdala, an almond-shape collection of neurons in the brain, plays a role in regulating emotions and managing fear (“The Structural and Functional Connectivity of the Amygdala: From Normal Emotion to Pathological Anxiety”). Researchers continue to work on the complexities associated with the fear spectrum that originates in mammalian brains.
My son, Tito, began recently to exhibit acquired or learned fear. The other day I had to take him to the eye doctor who has attempted to protect the left cornea with several different contact lenses. The problem is that all the lenses have fallen out. I situated Tito on the chair by giving him a bribe in each hand. With a chocolate stick in the right and a sucker in the left, Tito was content to recline back on the chair, waiting for the doctor to insert another contact lens. Without warning, the doctor decided to move up the chair mechanically. Whenever Tito lays down now, whenever I lean him back, whenever I take him back to the doctor, he resists by reminding me of 'the scary chair.'
Tito's been to ophthalmologists since he was 4 months old. Up to this point, he has shown little or no acquired fear of going. That has changed. What hasn't changed is that Tito still shows little to no signs of innate fear such as fear of heights, of strangers, of falling, of water, of getting hurt. He'll disappear through an unknown door or down a hallway, climb up anything, and bolt as soon as I set him down.
I wonder if acquired fear kicks in sooner than innate fear, and whether innate fear has to be mirrored somewhat to young children by their parents or caregivers.
Saturday, August 20, 2011
A question worth considering: to what extent is fear innate and/or learned?
I will offer some reflections on this question on Day 10. I'm afraid that on this day I'm sick and in bed.
Friday, August 19, 2011
Any parent will tell you that fear is part of parenting. Parents worry that something bad will happen to their kids, whether it be teased, bullied, get hurt, have an accident, start hanging with the wrong crowd, get into substance abuse, run away, get sick, die, etc. The list of worries shrinks and grows depending on the circumstances. One parent’s worst fear may differ from another parent’s worst fear. Still, it takes courage to be a parent.
What if your worst fear as a parent becomes a reality? How do you cope with chronic fear and stress? How do you keep going? How do you handle the challenges? How do you tap into courage, forbearance, patience, love, peace, and endurance in a time of shock and grief?
One time my husband and I were waiting in the family lounge at Seattle Children’s Hospital before checking in for an appointment. Two women were playing a game at a nearby table. We took turns chasing our toddler around as he explored the new environment. He kept going up to one of the women seeking her attention. She would look at him and say something to him. He in turn would squeal. As the woman and Tito played their little game, the conversation naturally turned to why we were there. When it was her turn to share, she reported in a matter-of-fact fashion (a way of keeping emotional distance from the pain—a trick I too relied on) that her 16 year-old daughter just had a liver transplant a week prior. Within the last two days she had developed an infection. Now she lay in ICU unable to speak or recognize anyone with her future in limbo moment to moment. I could tell that it was helpful for this mother to talk about her circumstances.
As the mother spoke, Tito kept saying “mama, mama, mama.” Then she said, “Just two weeks ago my daughter was perfectly healthy and playing sports. Then out of nowhere she started feeling sick and fatigued. All I want now is to hear is her say ‘mom’ again.”
I don’t know how things unfolded with this girl and her family. I could find out by visiting the chapel on the first floor of the Giraffe wing of the hospital. The chapel is where I went when Tito lay in ICU months prior. In the chapel is a book, and in this book is written the name, birth date, and date of death of every single child who has passed away at Seattle Children’s.
At a children’s hospital you see parents and caregivers in the mode of doing whatever they can for their children despite feeling alone and afraid. We actually enjoy our regular trips to Seattle Children’s Hospital because it feels like one large connected and supportive family. Every parent or caregiver shares certain things in common there: a child in need of medical intervention, and fear.
Thursday, August 18, 2011
When overcome with fear for my child, it is difficult to discern all of the voices. Voices of doctors; voices of friends; voices of relatives; voices of strangers; voices in my head. The nice thing about people’s input is that it stems from genuine concern, good will, best intentions.
In the beginning, doctors said that they could not help because they had no idea what was going on inside my baby’s brain and skull. People quizzed me on what I did during the pregnancy that may have caused my son’s disorder. Others said that everything would be fine, not to worry. Friends and strangers shared stories of people who became blind or deaf or who died from complications of my son’s condition. Some insisted that my husband’s blindness had some correlation to our son’s nonfunctional left eye.
Our son presented with the first signs of NF1 at age 7 weeks. A clinical diagnosis was finally given when he turned 6 months old. Along the way, the most fascinating input came from those who spoke for God: that God knew we could handle a sick child; that God needs babies in heaven too; that God demands faith like Abraham who was willing to offer his only son Isaac on the altar. God’s voice became indistinguishable in the mix.
On the day of my son’s big surgery it occurred to me that God is not confined to words or opinions. Beyond language, in silence, is where I experienced God as sheer presence. My fear of this day evaporated.
Wednesday, August 17, 2011
At last I felt ready, over a year later, to dig out the large packet of information on NF1 from the geneticist. I experienced fear and denial in the same space. They fed off one another.
Up til then, the packet lay buried under a pile of papers in the den. Now it resides at my bedside as a visual reminder that I ought to read all the pamphlets and articles. Some nights I have the courage to open up the packet, though I never like what there is to read in there. Does my son have a serious form of NF1? If so, what will get him—scoliosis, childhood leukemia, malignant tumors, an aneurysm, learning disabilities?
After my epiphany--when the question came to me that if I had no fear around my son's incurable medical condition how would I live my life differently--I noticed the extent to which I avoided anything that would remind me of my son's condition. A nice little old lady at church who told me that their nephew died of NF1, I made sure never to cross paths with her. The brochures that mention how the tumors can turn cancerous, I didn't want to read those. The ctf.org site that a nurse told me to visit, I never returned to it after learning that it's the Children's Tumor Foundation.
I notice how often fear prevents me from enjoying the moment. Sometimes it is painful to watch my son play, laugh, sleep, and cry. Today he cried "No, don't like it" over and over again. I asked him what he didn't like: Mama's singing? Looking at the books? Playing on the pillows? Then I asked, "You don't like to be patched?" He began to sob uncontrollably, saying "I don't like it. I don't like it. I don't like the patch." He was close to finishing his four hours for the day and was ready for the countdown (we countdown from 60 together when it's time to take the patch off).
If fear is part of the human condition, then it must serve a purpose. Is it even possible to rid ourselves of fear? Fear does one of two things for me. It either paralyzes me or helps me get into action to do what needs to be done for my son, even if I don't like it.
Tuesday, August 16, 2011
“Which is easier, to say to the paralytic, ‘Your sins are forgiven,’ or to say, ‘Stand up and take your mat and walk’?” (Mark 2:9).
It’s difficult to go out as a family these days. Ever since our son Tito had a brain and skull surgery over a year ago, he hardly looks like he used to. People used to comment on what a ‘perfect’ baby we had after he was born. His features were petite and refined, like a chiseled statue that attracts the eye. I liked it, vainly put, when people said that Tito resembled his mama. Those days have passed.
Tito looks different than other kids, so when we go out in public it means having to endure stares, pointing fingers, and comments. I think of the deformed Joseph Merrick (the Elephant Man) and the hell he must have faced as a child and adult. Just last week at the park, one little girl started to cry after seeing Tito near the slide she wanted to go down. She quickly climbed back down the roped net and vanished. Some older boys said, “Dude, did you see that baby? He doesn’t have a left eye.” I wanted to scream, “Yes he does . . . the eyelids are just sewn partially shut, and he has a gold weight inside the lid to keep it closed.” Instead, I picked up Tito and departed with our vision therapist in tow.
It’s no fault of Tito’s. “We nicked several nerves behind your son’s left eye trying to remove the tumor,” explained the surgeons. I thought the purpose of the surgery was to patch a missing bone in Tito’s skull to prevent the brain from entering the left eye socket, not to remove a tumor. This added detail meant additional hours for Tito in the OR, and they couldn’t even get it all.
A missing skull bone, tumor, cranial-nerve damage—these are complications related to a condition called neurofibromatosis type 1 (NF1). It means that Tito lacks a protein in his body called neurofibromin. The average person takes it for granted that he or she produces this tumor-suppressing substance, which tells a cell when to stop dividing. NF1 affects the skin, nerves, and bones. It was once thought that Merrick suffered from NF1. Some argue that he had a combination of NF1 and Proteus syndrome.
As a two-year old Tito has no awareness, at least for now, of what he looks like. He has no recollection of the brain and skull surgery nor of the seven subsequent trips to the OR for the left eye as a result of the mess caused by the brain surgery. Thinking of the future, we have no clue what it holds. As one friend whose daughter suffers from hydrocephalus put it, you just never know; even the doctors do not know. The question now is whether to pull Tito’s left eye since it has no sensation, it fails to blink properly, it produces very few tears, it has limited movement, and the cornea is ulcerated. More so, as people point out, Tito looks funny.
Though Tito suffers from the effects of his condition, he lives without fear of it. He is highly social and loves to be around people. In the grocery store, Tito will keep saying hi to someone until he gets a response. For me, it's a different story with strangers. We went out to dinner as a family. A gentleman was standing in the entryway waiting for his wife to finish up in the bathroom. He saw Tito and began to tell of his wife’s recent trip to Africa. Her mission as a nurse was to help perform surgeries on African children who had ‘monstrous deformities.’ Another incident occurred while out at a coffee shop one recent Sunday morning. A man spotted Tito and came up with a wince on his face and said “Ooooh, what happened?” We explained that Tito has a tumor condition, to which the man replied, “You just need to pray for healing. Jesus can heal him. Jesus is the one who can work a miracle in your son.”
An insight has followed for me and my husband. Which is the greater miracle: for our son to be healed and for his looks to change so that he can be accepted by society, or for him to know each day he has on earth that he is and always will be loved? I take comfort in knowing that my son radiates joy because he is loved. It haunts me to see perfectly healthy children grow up unhappy because they don’t get the love they need.
I see a connection and/or disconnect worth exploring between love and fear.
Monday, August 15, 2011
My two-year old son, Tito, can sing the first verse of Amazing Grace. It ends with ‘I was blind but now I see.’ Unless you have heard your visually impaired child sing this; unless you have had to restrain your baby to put on an eye patch; and unless you have had to fight to save your child’s vision, you cannot fully appreciate your own ability to see.
Scripture has plenty of miracle stories in which Jesus heals people: the blind, the crippled, the bleeding, the dying—often with only a touch or a few words. Jesus passes by Bartimaeus who sits by the roadside pleading for his sight. Bartimaeus said, ‘Rabbi, I want to see.’ ‘Go,’ said Jesus, ‘your faith has healed you.’ Immediately he received his sight and followed Jesus along the road (Mark 10:51–52, NIV). But what if your child could see and then loses vision? I’ve been pondering where the miracle is in that, and will share my insights in the next post.
To save vision in Tito’s lazy eye, we’ve had to enter the scary world of patching. It involves covering Tito’s good eye for an extended period every day. In our case, Tito patches 4 hours a day. Patching is, indeed, a burden for the child and the caregiver. All aspects of life—naptime, mealtime, playtime, running errands, having friends over, going out—revolve around it. Once the patching sessions begin, I must be continually vigilant and present.
What goes on in a parent’s mind of having a child born seemingly perfect only to present with problems in the early weeks of life? What has it been like watching my son’s appearance change for the worse? I say worse because of how others react when we take Tito out in public. Alien, monster, and pirate—these are some of the descriptors I’ve heard people say in reference to our son in an attempt to accomplish what I'm not sure except to silence their inquisitive children.
Accepting what is so remains difficult. My son has NF1. Living with a never-ending fear that my son will be asked stupid questions and teased for the way he looks is a rough road too. Would a prosthetic left eye and lifting the eyelid improve his looks so that he will have an easier time socially and psychologically? This is the question posed recently by some of Tito’s eye specialists. I fear that Tito will be picked on and have to answer inquiries his whole life if his left eye remains. I am equally afraid of Tito losing his eye permanently by surgeons plucking it out.
In moments of tough choices, I find no escape from the paralyzing effects of fear except in the question: If I had no fear around my son’s medical condition, how would I live my life differently?
Sunday, August 14, 2011
Today's post has to do with observing. As someone who values research and analysis, it is counter-intuitive for me simply to notice. I prefer to interpret and find meaning. But I'm finding that taking notice has value too.
What I have observed with fear is how quickly it comes on. Without warning, with no time to resist, my fear can grow to an unmanageable size. The level of fear I experience is quite disproportionate in size to the amygdala, that small almond-shaped structure in the brain tied to emotions.
Like the time, for instance, when I ran into a pack of ferrel dogs. It was dusk. I was alone on a nature trail. As fear flooded my body, I forgot everything. I forgot that I had pepper spray in my pocket. I forgot to breathe and began to hyperventilate, losing sensation from my mouth on down except pain in my chest. I forgot that I should not run the other direction.
So fear comes on suddenly, usually as a result of an event or thought, and causes forgetfulness. The curious thing is that I tend to remember very well those times of being afraid. When my son was just seven weeks old, I know exactly what I saw that made me stop what I was doing: mosaic patching on his skin, like stained glass, though not in bright colors but faded brown. Seven spots appeared overnight on different parts of his body, each with a peculiar size and shape. I remember exactly where I was in the house: in the nursery at the changing table with my baby. I remember exactly the time and day of the week: 9:15 am, Sunday morning, getting ready for church. I remember exactly who was in the house.
Fear without warning. Fear and forgetfulness. Fear and remembering. What a peculiar thing fear is.
Saturday, August 13, 2011
A fascinating thing I experience with fear is the direct correlation between what I'm thinking of and my level of fear. It makes little difference whether my thoughts are based on fact or fantasy. A lot of my fear stems from thoughts of what could happen, a fear triggered not by reality but by the unknown.
Next is the fear of what I know will for sure happen, things I have no control over: that a loved one is dying, that my sister will soon be moving far away, that my son will need surgery. As soon as such dreaded events take place, then my fear dissipates, making room for other phenomena like grief, sadness, acceptance.
Fear of the known. In the months leading up to my son's first birthday I knew that he would have brain and skull surgery. Unable to sleep during the nights, I would dwell on the details of the surgery to come. Nurses and doctors made it clear what would take place. Our son would be cut open on top of his head from ear to ear with a zig-zag incision. The doctors would peel down his face after taking apart the bones in his forehead. He would need a blood transfusion and other blood 'products.' The bones would be put back with dissolvable plates and screws. He would need a bone graft to repair a missing portion of skull bone. The surgeons would save me some of my son's hair. He would spend time in the ICU.
During my sleepless nights, fear manifested itself in a physical sense. My heart raced. My breaths were shallow. I felt nauseous and weak. I had no appetite and no desire to keep going. I couldn't quit crying.
Then arrived the day of the surgery. It was a drizzly Tuesday morning, April 13, 2010, in Seattle. As commuters made their regular pilgrimages to work, my husband and I scooped up our tired and hungry one-year old son and made the short trek to Seattle Children's Hospital from the Ronald McDonald House for a 6:00 am check-in time. I knew that these were the final two hours of my son's life without scars. While waiting for the team of anesthesiologists, I ran my fingers through his hair. Any minute they would take him from my arms.
At 8:15 am, the chief anesthesiologist gathered her brood in a circle. “All of the surgeons are in the building,” I heard her say. It was time to let go. With my son out of sight (which hall did he disappear down?), I lost the ability to think and recall words. Turning to prayer, I censored myself because prayer is more than some magical ritual to avoid reality or to manipulate God into giving me what I want: my son back without neurofibromatosis type 1 (NF1).
As the day crept by, I noticed how my fear lessened while my son lay in a 7-hour surgery. Beyond the realm of fear was an unbearable silence that remained until I saw him in ICU after the surgery—when he was unrecognizable to me, and I to him. It's as if grief showed and chewed up my fear. Several insights followed. I saw an intertwining of grief and loss, and what I missed was my son's presence, his smiles, his wide-mouth slobbers on my chin, his response of “okay” after everything I said, him saying "mama."
Beyond the realm of fear was sadness. Beyond the realm of fear was acceptance of what is. And beyond the realm of fear was love.
Friday, August 12, 2011
I found Ernesto's discipline of sticking with the challenge inspiring. So I too am taking on a 30-day challenge of posting on my blog. My topic? Fear. Since I'm writing a book on fear, it seems natural to share my insights on this undesirable emotion or mental state for the next 30 days.
The impetus for my book began with a question, one that came out of nowhere as I was making the long drive to work at my father's paint store last spring. Suddenly, a question came to mind while I was bemoaning the fact that despite having a PhD I don't make enough money to cover the bills each month. Right in the middle of feeling like a total loser in life came this question:
If I had no fear and was not trying to impress anyone,
what would I create my future to look like?
I sat in silence with this question. As I imagined a life without fear and trying to look good, my back and shoulders and arms and head felt weightless. Peace overcame me. A couple of things struck hard. First, if I had no fear and wasn't out to impress anyone, I would be a musician. Strange as it sounds, I love to compose music, sing, and play the guitar, piano, and drums, but you'll never see me doing any of these things because I'm afraid to do them in public. Instead, I have spent 29 years of my life in school and have four degrees that range from computer science business to theology. The other striking realization was how much of my life I've spent in fear and the need for others to like and accept me.
Fear and the need to impress go hand in hand; yet, I have narrowed my topic to fear for one clear reason: I discern the need to manage my fear over my son's incurable tumor condition lest I let fear warp me. The question for me has become:
If I had no fear around my son's medical condition,
how would I live my life different?
As a human being, it is natural to have fear. As a Christian, I feel it is especially important to learn, with Jesus' help, to manage it. I read the 'fear nots' in Scripture, and yet, I still spend a great deal of time being afraid. Fear seems to take on a life of its own in my body, overloading my senses, leaving me unable to think or act rationally for minutes, hours, sometimes days.
Tomorrow, I will share the key event that moved me beyond the realm of fear to two other realms, one of acceptance, the other of grief.