These cold, dismal drives of acceptance

This feeling of driving home from the doctor's after getting bad news is becoming frighteningly familiar. This quiet, this nothing to say. The cold feeling of emptiness that sort of spreads out from the inside.

I do remember life as a mother before I had felt that way. When I took the girls to the doctor, worried about something horrible and left feeling reassured. Told that it was nothing, that everything was fine. It's hard to capture, but I can remember that feeling. Joy, relief, warmth. The opposite of these cold dismal drives of acceptance.

The smart guy was so nice, so good with max. He made sure to talk directly to him and compliment our family. But he also said that the right eye's fundamentally abnormal. Apparently, Max did not form a macula in his right eye. That's the specialized spot in your eye that allows you to see clearly. The cataract is simply a bulge in the posterior lens, nothing to remove since theres no macula to see with. He thinks his vision is 20/200 in the right eye. His left eye is still perfect.He told us to patch an hour a day at most & protect the heck out of the left eye.

I have a headache.

A total eclipse of the retina...

The pediatric eye doctor never called me back.  

A week after we saw him, I took Max to see the local optometrist who is very patient and good with kids. Max had been wearing his patch for a few hours. He could reliably see some of the items on the 20/125 and 20/200 level. But the optometrist thought the cataract looked more prominent and his impression was that taking it out might improve Max's ability to see out of that eye. He thought surgery might help.

20/200 is legally blind. Oh dear Lord, I am hoping for legally blind.... 

So I took Max to get a toy for being so good before going to visit daddy at his office to tell him. While we were waiting in his office I just peeked in Max's eye, the first time since I had found it back in April. The room was dark, his patch was on and I shone the opthalmoscope into his weak eye. 

The cataract fills his pupil! I am looking at an eclipse of the retina! All I could see was a tiny rim of red around this huge black blob, right in the center of his field of vision. I immediately ripped off the patch, much to Max's delight, feeling a horrible weight in my stomach. He can't possibly see around that! Patching is cruel!

I showered Max with kisses, updated my husband between patients and called the pediatric othamologist back. He was unavailable. But his secretary took my message and told me he would call me the next day. When he called, I told him that both the local optometrist and I thought the cataract was bigger and seemed to be seriously obstructing his vision. 

He said he hadn't though it changed at all but offered to see Max again that same day. I agreed to go because I needed him to answer my questions:

1. Is patching worth the tears or is it just torture?

2. Should his cataract come out? 

We arrived half an hour early, just in case, but still sat in the crowded waiting room for over an hour. The same grumpy nurse checked his vision and proudly declared she thought he was now at 20/800 in that eye, scowling at my comments about his vision the day before. I took a deep breath before I responded.

"Historically, we have not been able to capture his visual potential in this office," I replied coldly but professionally.

So then the doctor came in. He looked, he checked, he dilated and then decided Max couldn't see well enough out of that eye to justify worrying about the cataract. He thought it was indeed the same, a millimeter too small to remove. Surgery is only warranted for cataracts bigger than 3mm. And he thought there was no point to patching if his vision had not improved subtantially in that eye. 

"The light reflex is abnormal in that eye," he said dourly. "If the visual potential of the eye is abnormal,  I would not recommend removing the cataract. Not with an abnormal posterior eye."

But I couldn't help thinking: Those guidelines are for a normal eye, not one that is already struggling. Since we know his eye has some potential, shouldn't we at least consider taking the large black spot that is directly in the middle of his field of vision OUT?

So I asked exactly that.

"Surgery is only indicated for cataracts over 3mm," he repeated. I was starting to get frustrated. If all the mommies and daddies with children who had congenital problems had passively agreed that just because their child wasn't "normal" they didn't need medical or surgical treatments, where would we be today?

"I know," I said. "But this is Max. My Max's eye. Does Max need this spot to be taken out to allow patching to have the best chance at improving his vision in that eye?"

"No," he said.

"But aren't you giving up on that eye completely by doing that? He is three. I am a believer in the ability of children's nerves to adapt and make new connections. Are you sure there is no hope for this eye to get stronger?" I asked.

"No," he said. "I am not certain." 

"If we give up on the eye it will drift out and he won't have conjugate gaze and won't have the same professional potential...." I started rambling.

"That can be fixed surgically," he replied.

"But what about surgery now? To remove the cataract?" I persisted.

"There are risks with surgery," he said.

Yes, I know! He has had a few already, I thought but I didn't say it. I was alone this time. No husband to give me the "shhhhh" glare. 

All I could think was that the risk of no surgery was almost as bad as the worst likely outcome of the cataract surgery - to lose vision in that eye.

He knew I was not satisfied with his answers. So he offered to send us to the smartest person he knows. Who happens to be a neuro-opthamologist in Boston.

This is called a "smart-man" consult. I have done this before as a doctor but have never been the parent going to the appointment. If you don't know how to answer a question or are not sure what the next best step is, as a primary care doctor you can send your patient to a "smart man" (or woman!). The person I used to send people to in Virginia was a rheumatologist. He knew everything.  

I called the Smart Man today to set up our appointment. His first question he asked was how urgent is this issue? I told him. My son is three, the questions are: Do we give up on the eye or keep patching? Do we remove the cataract or leave it? 

"At three, we need to do all we can. Patch for 2 hours a day. I will see him December 20th," he said. 

He didn't give me much, but he gave me hope. A delicious dose of thirst-quenching hope.

 

Hoping against hope....

So today we went to see the eye doctor. The normal 4 month follow up from our last appointment. It's been a very busy time. This morning, we went to see if Max's vision had improved with the 4 months of 6 hours a day of patching. That is 126 patch applications, each one with the dreaded screaming and many incongruous Max tears.

He didn't even have a chance! They were showing him some weird thing that looked like a cross between a fish skeleton and a christmas tree and when he didn't name it, they moved on, assuming he couldn't see it. Then I suggested that she let him try with his strong eye first, so he could feel more confident about what he was calling these weird black and white things.

"Oh no," she said as the nurse shook her head and looked at me like I should know better. "If we start with the good eye they MEMORIZE."

She said that word memorize SLOWLY, like I was slow.

He is two. TWO! He does not memorize yet. But my husband's steely glare kept me from saying it out loud.

After the visit, the doctor tried to order an OCT, a fancy eye CAT scan. It looks at whether the retina and macula are normal. Since he couldn't discern a measurable difference between the cursory visual acuity exam 4 months ago and the one that was even less patient today, now my Max's right eye is "probably not going to respond to patch therapy." My husband seemed oddly okay with this idea, probably because of how terrible the whole patching thing is on a daily basis.

But give me terrible, give me screaming, just give me the chance that over time his eye will get stronger. I tell parents all the time how strong nerves are in young children. How versatile and resilient they are. How one nerve can take over for another and the end result is the same when they grow up.

Please, please, give me patching. Don't tell me there is no point to patching. That is giving up on my Max. Giving up hope. Please tell me my little knight has two eyes that can see.... Please tell me that eye has a chance.... It is 6:31pm and I have not gotten a call from the eye doctor. Our appointment was at 8:15am this morning. Does he know that I am waiting for him to call, with my phone in my hand for the entire day?

The Daily Crying

Because Max was born with congenital heart disease, I simply did not let him cry as an infant. I held him constantly from birth until the day of his surgery. During those four months, any crying triggered the calorie-wasting counter in my head. All I could think of was what a strain crying was on his tiny body and how if I lost him to this heart problem, I would have wasted precious time with him. Allowing Max to cry was inconceivable. 

Now he is two and a half and I have to put a patch on his strong eye every day at 7am.  And every single day, he cries. 

I've shut off the calorie-wasting counter in my head but his crying is still so jarring. He's been through so much, I just want us all to be able to enjoy him being a healthy 2 year old boy. But after breakfast it's time for the patch to go on. While his sisters are getting ready for school, he plays happily with his airplanes or fire trucks. I have to shove myself towards the pantry to get the eye patches out. He sees me coming with the “eye bam-bam” (as he calls it) and starts to run away from me.  

“No eye bam-bam!” he screams. “Somebody, help me!”

I calmly explain that we have to do this while gently putting a glittery jet plane over his good eye. And then he really screams, crocodile tears soaking the patch and my shoulder. For a little while, twirling him in circles helped. When that lost its appeal, I started jiggling on my knees until he giggled. When that stopped helping, I downloaded Cars Toons on the iPad. That was a good diversion for a while but we are now back to basics: tickling and nibbling toes, which usually works eventually. 

His sisters sometimes try to help. One sister even wore a patch with him for a few days and for two days, he didn’t cry at all with the patch. But then the magic was gone.

"There, there, Maxie-poo," his older sister says. "If you wear your bam-bam you can earn a toy." 

We have a reward chart but earning a new airplane doesn’t seem to matter when someone’s forcing you to forsake your good eye. I bought seventeen different types of patches but even sparkly glitter trains and shiny silver outer space “bam-bams” still take away his clear vision. 

So like any good parent, I occasionally let him eat a mint chocolate ice cream sandwich at 7am to help him calm down. I try to tell myself that it does not hurt and that it is working. His eye is getting stronger. I think of children who need insulin injections at this age and how hard that must be for the family. And I try to think of how normal it is for a two and a half year old boy to throw a daily fit. 

Yesterday, while his sister was playing soccer, Max found the little baby doll she had left in his car seat. He was talking to the little plastic baby and telling him that he needed his "bam-bam" now. He said it was going to get dark but it was okay because the doctors said so. He asked me for a "bam-bam" for his baby so I tore off a tiny bit of packing tape. He pretended to make the baby cry and said the same things I say when I put it on him, all except for the part about it getting dark. That must be what it's like for him. 

So this morning, I couldn’t do it. He was being so sweet and playful and happy. I just couldn’t make his world dark and blurry, even if the doctor says so. So I handed the patch to his dad and he put it on and then Max came running to me for comfort. He still cried, but it was a little less. Maybe this will work for a little while. 

Annual Euphoria

For the last week, I have been feeling more and more anxious daily. 

I thought I might feel better after we saw the eye doctor who said that it seems the patching is working and his vision is improving. I was so happy that he could read the 20/200 line with his weak eye, last time he couldn't read anything on the chart with that eye. I wasn't even daunted by the fact that now we had to leave the patch on for 6 hours a day instead of 4. It's working. It's worth it.

But July is when we go for Max's annual cardiology check up. And as the appointment gets closer, I become less able to counter the thought that there is a chance we will be told something horrible. Trying to recapture the euphoria I felt when I left the appointment the year before was futile. All I have been able to do is watch him like a hawk, looking for some subtle clue that could help me anticipate what the ultrasound will show this year. We had been told last time that there was a chance the tissue under his pulmonary valve would grow back and if it started to, he may need another open heart surgery at some point. Also, there was this issue of whether he had Tetralogy of Fallot as it seemed to say in the last cardiology note.

We go to Moosehead Lake every year for the fourth of July. While we were there this year, Max and the girls started a new game where they chase each other around.  This game involves a ton of happy screeching and I think someone is a dragon. The kind of thing I usually try to tune out. But one evening, as I was making dinner, something caught my attention.

"I need a break," I heard a little voice say. The words came from Max's mouth. I looked up and he was sitting down. Is this exercise intolerance?

So I became peripherally aware of every chasing game and tried to determine whether Max was requesting these "breaks" on a regular basis. It seemed that he was. But so were the girls, so maybe it was just normal play. 

Then we came home and had a week of unseasonable hot weather for Maine. Of course the kids continued to play the same chasing game. Now Max was asking for breaks AND sweating all the time. Sweating is a sign of heart failure.

So I started watching for all the other signs of heart failure I could possibly think of. His appetite seemed down. He was mostly drinking milk. But it was 95 degrees outside after all. Maybe this is just a coincidence. Stop looking for things. After Monday's appointment, you will know for sure. Guessing right now is only giving you an ulcer. 

So this morning we went to cardiology. I was so nervous, I realized when we got to the appointment happily that Max was wearing shoes. I remembered mentioning them but couldn't remember actually putting them on him. Their office had moved which was kind of wonderful. The old office was right across from Maine Medical Center where he had his open heart surgery and the flood of memories always doubled my heart rate and instigated a migraine. The new office was nowhere near the old one. I didn't even have to see the hospital. We were driving to a new place with no memories. It was wonderful.

Our cheerful Irish cardiologist did the same thing he did in the old office. I didn't even mind when he asked us to give him a moment to finish some calculations because I had to pee. By the time I got back to the exam room, he was smiling and making jokes and he pronounced: "Everything look great." Explaining there was no reason to think he would need an additional surgery any time soon. The next thing we were to prepare for was a heart tracing for 24 hours when he was about five. 

Just to make sure, I mentioned the "I need a break," the sweating and the issue of whether my son actually might have a worse heart lesion and he was just trying to break it to me in stages. 

"Yes, it has been hot. And I think that is a good strategy. I use it sometimes!" he replied cheerfully with a relaxed smile. And he agreed that no, he did not classify Max as having Tetralogy. 

Maybe "I need a break" was just a natural consequence of being a little brother. It certainly was more polite than yelling: "Leave me alone!"

We came home and I rolled up the rugs and started potty training. 

Max is fine. I need to get him ready for school!

A beautiful, frivolous thing

So despite Max's illness, my husband and I went away for a night and left him in the competent hands of his Grammy. My husband and I had registered to be in relay triathlon teams at Point Sebago Resort, the type of beautiful, frivolous thing that has always seemed irrelevant when faced with Max's health issues. But we were on teams, we had to go!

...briefly trading his glasses for daddy's goggles...

And it was wonderful. We were only gone for a little over 20 hours, but I returned bathed in sunshine, cleansed with sweat and refreshed in spirit. While we were gone, Max continued to mend. His breathing is completely back to normal now. He was so happy to see me, he didn't bother to fight putting on his 'eye bam-bam' this afternoon. I've discovered that twirling him around in circles for the first five minutes of the patch helps. I may need to start taking leftover Zofran so I don't throw up, but he is happy. He loved hearing about our race and wanted to know all about me "running really fast" and daddy "swimming in da lake wif his glasses."

Today made me remember the importance of taking care of yourself when you are taking care of someone else who needs you. Especially when you are too scared to leave them.

Tickling your tummy

My little Max woke up from his nap yesterday and desperately wanted to go use his new blue bat and blue soft ball. His oldest sister had a softball game at a park with a fun playground. Even after his rest, he was still breathing heavy and fast. Once I let myself count his respiratory rate, I found myself doing it almost constantly. 32, 36, 40.... All well above normal and he didn't have a fever to blame it on anymore. 

Max had barely eaten anything all day and I was making no progress with the usual foods he liked at home. The sun had come out and the girls wanted to go play before the game. I decided we would stop at Mc Donald's to get Max a milkshake on the way. I would try to keep him in the car, watching movies and drinking his milkshake instead of running around. I could watch the girls from the car. I didn't want to keep them hostage just because their brother was sick.

Max drank most of his chocolate milkshake by the time we arrived at the softball field and as soon as I opened the car doors, he charged outside after his sisters with ball and bat in hand. He happily whacked the ball around with his bat, hockey-style, on the basketball court adjacent to the softball field.

After a while, I was able to entice him back to the car for a little Nemo break. As he clambered into his seat and I started the movie, I heard him breathe heavily as each second passed on the DVD display. That's a respiratory rate of 60! Should I take him to the ER? I should call his pediatrician first....


But he had just been running around so I tried to listen to my own advice: Do something else. Focusing on my daughter's softball game, I blocked out Max's breathing and tried to direct my brain towards what was happening outside the car. After the inning was over, I let myself count his breathing again: 40. And then he asked me for a snack and I noticed he had consumed his entire milkshake. He didn't have a fever and seemed to be feeling a little better.


Antibiotics and steroids don't treat heart failure. Perhaps this was pneumonia and not just wheezing with an ear infection, but regardless it seemed less like heart failure as the day worn on. I still had him sleep with me last night, dozing only for a few minutes here and there for the second night in a row. Today, when I felt his breathing, it was closer to my respiratory rate than my heart rate even after running around. This afternoon when I took off his rocket ship socks, I ran my fingers over his shins to check for swelling. None. 

He was laying down so I palpated his belly just to make sure his liver wasn't enlarged.

"What you doing mommy?" he asked as I felt his belly.

"Tickling your tummy, sweetie," I replied.

"No, mommy. You check me," he said as he peered at me over his glasses and helped me by lifting his shirt.

"I check your tummy!" I said, engaging in the same silly bedside manner I use with my patients. I smiled, infused with joy upon discovering the absence of a protruding liver edge.

"I fine, mommy," he said, brusquely, as he put down his shirt.

Yes, Max, you are fine, I thought as he charged away from me, squealing with delight and playing with his sisters. 

Go do something else.

So Max is sick. He has had a little cold for the last week. I came home from work and he just wanted to cuddle instead of play in the long lost sunshine with his sisters. I knew something was wrong, so I shouldn't have been so terrified when I realized he had a fever within the hour. He refused to take ibuprofen and just wanted to cuddle and watch cartoons. All four of us piled into my bed and watched tv, the girls happy for my laxity about the usual screen time rules.

But as I watched Max, I realized he was breathing really fast. Really fast. Maybe once a second although I didn't dare let myself count.

It's just the fever, I told myself. Once the fever comes down, his breathing will be normal. But I gave him his Xopenex anyway. They say the apple doesn't fall far from the tree and I wheeze when I get colds, so it stands to reason he would too. Only he has to have Xopenex since the plain Albuterol binds to lung receptors but also to heart receptors and could stress his heart.

As he breathed in his medicine, my brain offered a completely unsolicited thought: Breathing fast can be a sign of heart failure.

He slept on me for hours, my heart in my throat, as I watched each breath with my hand on his heart, feeling his own special heart beat. He doesn't have a "lub-dub." And then another thought: Could this fast breathing in fact be his heart failing and the cold is just the trigger? 

I can listen to anyone else's lungs but I can't listen to Max's because all I can hear is his heart murmur and I want to cry. So I tried to reassure myself and held him tight. After a few hours, he woke up and said: "Momma, I feel yucky."

I gently encouraged him to take the ibuprofen and thankfully he did. I watched his breathing and held him with his head on my left shoulder, until his fever broke. I thought maybe his breathing was slowing down a little. His brow was damp with sweat. I finally got up enough courage to count his breathing: 34. That's fast but not as fast as it had been.

I will take him to the pediatrician in the morning. It's more likely he has pneumonia than heart failure, right? I kept giving him his breathing medicine all night and dozed for only a few minutes at a time, noting every hour as it passed on the clock. When I did sleep, my cheek resting lightly on his head, sure  this would wake me if the fever returned.

On the way to the pediatrician's office we saw a procession of police cars and an ambulance guiding the runners carrying the Maine Special Olympics Torch. Max was in heaven and wanted to tell everyone at the doctor's office about the police cars and the "amb-ance" he had just seen. He was such a good little patient, climbing up on the table and cooperating completely with the doctor and nurse.

We left with prescriptions for antibiotics, more Xopenex and steroids and went to Target to fill the scripts. Max was so happy, delighted to get a prize as we do when the kids have to take antibiotics, and he chose a blue tee-ball bat and a blue glove and ball.

We got home and he ran around, happy to show his sisters his new toys and then I suggested a rest. He wanted to sleep with me so we lay down on my bed, assuming the same sleeping position as last night. He was breathing fast. Quite fast. It's just because he has been running around, his breathing will slow as he sleeps.


So I held him and watched. But al I noticed was his neck vein visibly vibrating and him sucking in at the top of his breast bone. What if the Xopenex has strained his heart? What if he has to be hospitalized for pneumonia and they realize it is heart failure?


Unable to reassure myself, I slid out from under him and rested him on my pillow. Stop watching him breathe, Gretchen. Suddenly what I was doing felt like the long wait we had as we prepared for his heart surgery, with me agonizing over every tiny change in his status. He is on the right medicine. He is sleeping peacefully. Go do something else.

So he is still asleep. The piano teacher is here and my girls are having their piano lessons as I try not to be terrified and wait for the magic of modern medicine to kick in.

Maybe it wasn't my fault

With our genetics and retina appointments behind us, I thought I would feel relaxed, reassured. Today was supposed to deposit me back where I was before I found that spot in his right eye. The news was all good. The genetics doctor in Portland does not think Max has a syndrome or major chromosomal defect. Just three multifactorial congenital 'defects.' I feel like I have been waiting to exhale. So why, now that I am home and making supper, do I still feel like I can't breathe?

The pediatric retinal specialist did not think Max's eye problem would get any worse or cause him more trouble as time went on. The way his eye looked did not make him think of any subset of kids with other health problems.  The only restriction he would have is that he could not be a fighter pilot. No worries there. Everyone was so nice to him in that huge grey tower of eye and ear care. Max even seemed to enjoy the adventure - that is everything except the ultrasound of his eye, which terrified me, so I didn't blame him. When the doctor said he wanted us to take him for an ultrasound, I had flashbacks to when the cardiologist listened to Max's heart and promptly said he needed an ultrasound. What was it he saw that worried him? But Brad reassured me: They do this all the time in adults. It's no big deal. And, true, the ultrasound did not reveal any surprises.

Then this morning at genetics, bile surged into the back of my throat as the doctor measured the distance between Max's eyes. All these different distances are plotted in curves showing 'normal' and abnormal' in a grandly morose textbook called Smith's Recognizable Patterns of Human Malformations. My son was being plotted on a chart to see if he was malformed in other ways we hadn't thought of yet. Super.

But those were also fine. And my surprise turned out to be that the cardiologist referred to him in his last note as having true Tetralogy of Fallot, not just a VSD and pulmonary stenosis. Quickly, I tried to reassure myself that this term shortens the amount of words it takes to explain Max's heart to someone else. Right? Its just economy of words. But if he is using that term, does he think that something else will need to be addressed with Max's heart? He did say his aorta was "generous" but my fountain of hope was the fact that he did not have enough "defects" to fit the true label of Tetralogy of Fallot.

But what if the cardiologist was merely trying to meter out the news to us in manageable bites? What if when we go back in July he will tell us yet another new thing wrong with little Max's heart? And why was my husband so confidently agreeing that, yes, our son had Tetralogy? Had I been clinging to meaningless minute details just for my own peace of mind?

The geneticist did point out one interesting fact that I had not thought of yet. Despite what all the doctors have told me, I have never been able to shake the thought that Max's congenital injury was due to some unidentified grossly negligent lapse in my in utero protection. Somehow, I let this happen to him. Even if I didn't cause it, I didn't stop it. But the doctor today again reiterated that Max's problems were not because of anything I did. For the first time, it didn't sound entirely hollow. His lip and heart were both what we call "midline defects" which means they could have been caused by the same insult. But this eye thing, that was not a midline problem. It was just on his right side. According to her, this would just be classified as a random occurrence in no way related to his other problems.

While I still need to figure out whether my hope has rightfully evaporated or not, we now start to wait for his annual cardiology appointment in July. And just in case something goes terribly wrong and he doesn't get to fulfill his dream to drive a real fire truck, I got him one. It even squirts water from a hose.

"I know that I am breathing in..."

"If your mind wanders, gently guide it back with your breath: I know I am breathing in, I know I am breathing out...," my yoga instructor coached in class yesterday morning.

My mind was wandering. Big time.

We go to see the retina specialist in Boston tomorrow. The idea that something 'more' could be wrong with my Max has me bathed in doubt. What else have I missed? I must have looked in his ears dozens of times since he was born, never wanting to make an unnecessary trip to the pediatrician's. But I never thought to double-check anything after an appointment. I only tried to prevent unnecessary appointments. I never checked his eyes. It was the same approach I took with my girls. If any of them actually had an ear infection, I would always take them to the pediatrician. Aware that I worried a lot about my own kids, I have always figured it was better if I left their medical care to someone more objective. I have always assumed that if my fear affected my judgement, it would be a negative thing.

We have a beautiful little bookstore down the street. I love to go in and wander around, just looking at the books is soothing. A little over a month ago, I picked up a nice solid hardcover labelled "a family memoir" as I browsed. When I read the cover, I realized it was a book about a boy born with congenital heart disease who dies as a teenager.

I dropped it quickly back on the shelf as if it had burned my hand and found a different book that didn't hit so close to home. But I couldn't stop thinking: "What if there is something in that book that I need to know to keep Max safe?" It haunted me for a few weeks until I came home with a copy of Immortal Bird last week.

Bravely, I read the heart-breaking story of Damon, Doron Weber's son, while watching my own play happily as Damon undoubtedly did when he was two.


So many things reminded me of us and Max. The book is about what can go wrong if you trust too much in medicine, in doctors, in the healthcare system. This is a story about why science can't always squelch that little voice in your head. This is a story about why we need to heed our fear.

This phenomenally educated family's first born child had prenatally undetected severe congenital heart disease. He had a Fontan operation which bought him many years but then developed complications and had to have a heart transplant.  His family gave him so much during his precious years on this planet, but medicine ultimately failed him despite his father's constant pursuit of perfect care for his perfect son.

Max has had a cold while I've been reading this book. I started his inhaler and gave him ibuprofen. Everyone else in the house had it already. I tried not worry, watch his breathing as I normally do and waiting for a fever over 101 for more than 3 days to call the pediatrician.

No fever, just a cough and runny nose. But my nanny's daughter has been sick a lot lately and she had a fever. She was worrying me, so I suggested our nanny bring the kids to me at the end of my day and let me check her daughter. I plopped Max and her daughter next to each other on the exam table.

"Check me too, Mama!" Max requested, not to be left out of anything.

So I did. And two glaring bright red pus filled ear drums met my gaze into his unsuspectingly cheerful ear canals.

"Do your ears hurt, Max?" I asked.

"Yes, mama. My ear hurt," he said as he put on a sad, sympathetic face and patted both his ears.

Up until that very moment, I would have always called his pediatrician in such a situation. Always. I assumed my fear would negatively affect my ability to provide medical care for those I love the most. But now my perspective has changed. I was the one who found his eye problem. Doron Weber was the one who kept his son alive for as long as he did. Trusting in medicine may have allowed Max to lose sight in one eye and not allowed Damon Weber to live all of the years he did.

I called my husband to see if he agreed with my choice and we called in a prescription for Max's antibiotic.

A Mutual Mess

Time outs have always seemed easy for me. A fan of Phelan's 1,2,3 Magic, my girls knew the method so well that by the time they were Max's age, all I had to do was raise my eyebrows and a finger for each number. They never got past 2.

And now Max. I try to be equally strict which is relatively easy since he is such a good natured boy most of the time. Overall, he exhibits much less drama than the girls, just like everyone says. So when he does something wrong, it is usually because his sisters have provoked him. I still try to be strict if he hits or throws something, but I probably end up calling it a mutual mess between siblings at least half the time and focus primarily on separating the children or redirecting Max.

Despite getting a cheap plastic glow in the dark alarm clock from CVS and telling Max that this clock's alarm is what tells us when his patch goes on and comes off, he is starting to get angry with me. We call the clock his "Fire Clock" because he so desperately wants to be a fire-fighter and he thought it looked like the clock in a fire station.

But this morning, when I was trying to put on his "eye bam-bam" as he calls it, he hit me. It was purposeful, with a lot of anger behind it. He hit me solidly in the face. And I started to cry. Then he started to cry and said "Sorry, Mama! Sorry, Mama!" between sobs about a million times.

Do I give him a time out for hitting me? Does he have to be punished? I feel like putting the "eye bam-bam" on every day is a form of punishment itself. If a mother came to me in the clinic with this story, I would say try to keep it  fun, lighthearted. Don't let him know that you feel like this is punishment. So I will try to take my own advice, but it is not as easy as it sounds. And I still worry if about the stress on his heart when he screams. And I still don't want him to suffer one more minute than his medical problems already demand.

But I did give him a time out. And then I picked him up and tickled him silly.

"Look, Mommy! Milk!"

I am convinced that fear is a useful emotion for a mother. Doesn't it help us protect our children? Hunter-gatherer mothers surely held their babies close at night while they slept to protect them from the dangers of wild animals and cold. Was this a sensible precaution or an instinctive fear? Do modern mothers ache to co-sleep because of some genetic instinct to keep their babies safe?

I am certain that fear has helped me keep my children safe. For example, take water safety. As a mother, my fear of them drowning makes me vigilant when even small bodies of water are visible, applying every safety tip I offer as a pediatrician. I counsel parents about how to keep their children from drowning and talk to them about developmentally appropriate precautions. But for parents to actually act on my suggestions, there has to be an element of will, concern, awareness that this risk is real. That caution in their particular setting is warranted. Sometimes that may come from knowledge, but it often comes from fear. If fear is just a useless emotion, separated from true danger and meant to be medicated, how do you reconcile that as a parent, your children are likely to almost always be at risk of something truly dangerous?

If I was not so afraid of Max losing his vision, would I be as insistent about him wearing his patch? My knowledge just magnifies my fear. Medicating my fear would put him at risk of losing his vision.
We went to pick up his glasses today. Ready for him to object, I planned that he could take off his patch when we tried on his glasses. But he still cried "No Mommy!" as he yanked off the thankfully durable steel frames. So I upped the ante. If he wore his glasses the whole time we were grocery shopping, then we could make cupcakes when we got home. He loved this idea and wore them happily as he "drove" the spaceship grocery cart up and down the aisles.

He kept pointing at things and showing them to me, as if he had never seen them before. The grocery store seemed more full of wonder than Costa Rica. "Look, Mommy! Milk!" He exclaimed, pointing at the wall of milk. Maybe he hadn't really seen things this clearly before, he certainly has never been so lively at Hannaford's.  

The rolodex in my head

Elementary school was an uneasy time for me. I used to stand in front of the mirror in my closet every morning and go over a list of what was worrying me: my parents had a fight, someone at school was mad at me, I still hadn't been invited to a specific birthday party. I would mentally check off each worry by offering myself a reassuring comment. Often I felt better when I changed my outfit a few times. After donning something I felt confident in, it was like magic. I was ready for the day.

This habit served me well in residency. I would keep a running checklist in my head of all my patients that were worrying me, a list of any tests or results I had to follow up on. I learned along the way to get up early for the outfit changes and to address my worries throughout the day, not just in the morning. For every important event in my life, I have always had a well planned (and slightly magical) outfit, including all the births of my children and for Max's surgeries.

Today I was driving home from work and noticed that same uneasy feeling in my chest, a sort of wobbly insecurity. The same thing from my closet as an elementary school-girl. The rolodex in my head started to flutter. What is wrong? Why am I worried? Is it work? Did I forget to follow up on a patient? Is it Brad, did we have a fight? Is it my mom? My sister? My dad? My kids?

Is it Maggie? Maybe, she has strep throat but I got her treated. She feels better. I waited a minute, but no change in the wobbly feeling. So no, it's not Maggie.

Is it Izzy? No, I have to watch her for fever or sore throat but she is okay so far.

Is it Max? The wobbly feeling worsened. It is Max. So I move down the algorithm. What is it about Max? He doesn't have a fever. He wore his eye patch this morning. He wasn't fussy. He ate breakfast well. His color was good, his activity level normal.

I am still going down my list as I walk into the house and there it is, a form from the pediatric genetics office with lime green highlighter glaring angrily at me. Under the "things to bring with you to the genetics evaluation" is says: "...pictures or medical records from other family members...find out if anyone has had birth defects or mental retardation...."

My heart starts racing. I hate medicine. My son is not defective. I suddenly felt a huge wave of sadness and guilt for having referred countless patients to genetics: I'm so sorry. I didn't know it made you feel like this.

But then I started my auto-reassurance: We already had him screened for one fatal genetic disorder, 22q11, and it was negative. He has met every developmental milestone. We do not have a family history of genetic problems or birth defects. He is not dysmorphic, he is handsome. He just has three birth "defects."

I think I just figured out why some parents no-show for specialist appointments. And I am definitely going to need a new outfit for this appointment.

daily check up

With Max physically attached to me for most of the first year of his life, it was easy to check on him. Most of the time I was either wearing him in a sling or holding him on my left hip. When he was a year old, I couldn't fully straighten my left arm from holding him constantly. I slept with him in his room on a futon. The only time he had to sleep without me had been in the PICU. I could not sleep without hearing his breathing and knowing he was okay.

I dreaded putting him in his crib alone. It seemed like jail. Willing to accept a lifetime of sleep problems to not relinquish a minute of holding him, I waited. A year after his heart surgery when his cardiologist said he was doing great, I finally put him in there. And he was fine. I, however, was not. For months, I tiptoed up two or three times a night to check on him, feel his heart beat, check his breathing.

Now he sleeps in his own bright red fire truck twin bed. At bedtime after we read our stories, he holds my face with both his sweet little hands and says: "You sleep me, mommy."

"Yes, I sleep you, Max," and kiss him on his kissy spot right in the middle of his forehead,  making sure the temperature of his skin feels normal with my lips when I kiss him, that his brow is not damp with sweat from heart failure.  And thus begins his daily check up.

Then I lay next to him as his eyes close and watch his breathing. It should be comfortable and slow, not faster that a breath every two clicks of his Humpty-Dumpty clock. He has wheezed a few times, so I make sure his breathing out is not too much longer than his breathing in. I watch to make sure his nose is not flaring out, that his breaths are easy.

When I am sure he is asleep, I lay my hand on his chest and feel where his freight train of a murmur used to be. Sometimes I feel the memory of his murmur, but if I wait long enough it begins to just feel like a normal child's heartbeat. I make sure its not too hard, fast or irregular.

And in my mind I review each day. When I tickled him, was his belly soft, his liver normal? Yes. When I took off his socks was there any indentation showing edema? No. Was his color good? Yes.

But tonight as I went through these customary steps, he kept rubbing his left eye, the good eye, as he fell asleep. He didn't rub his right eye at all.

Why is he only rubbing his left eye? Does that mean his left eye hurts? What if the process in his right eye could start to affect his left eye, his good eye? Is he rubbing his left eye because it hurts? What if this gets worse and he goes completely blind?

And then he rolled over on his side and I saw that he was holding his brand new Finn race car tightly in his right hand.

"I can't see mama!"

The eye doctor said to patch his good eye for four hours a day and handed me a single generic eye patch, telling me I could get more at the pharmacy.

I stared at it for a few minutes while he wrote in Max's chart. I knew from moms in my practice that eye patching wasn't easy. I knew from medical school that if we didn't patch Max's good eye, there was a good chance he would go blind in his bad eye.

"What do I do if he won't let me put it on?" I asked.

He said to let him get used to the glasses first, then the patch and if it wasn't working he would give us eye drops to blur his vision in his good eye.

For a moment, I actually wished that he had said surgery would help. Fleetingly, it seemed like an easier option than patching and glasses. Terrified to embark upon what sounded like a tortuous journey, I realized I needed real mommy advice. I knew what the medical advice was but I needed to know how to do this from a mommy perspective. So I read every mommy blog I could find on eye patching and we went to CVS and bought a box of patches and a bag of lollipops.

I decided I would try while he was watching Fireman Sam, his current favorite, and offered him a lollipop once we put it on. I gently coached him that we had to try the patch so he could drive a fire truck like Fireman Sam someday.

"Okay, mama," he said and leaned towards the patch. But as soon as I put it on, he screamed: "I can't see mama! I can't see!"

I stopped breathing, sure that he had already lost his sight in that eye. We were too late. I hadn't noticed soon enough. But I could hear the voices from the mommy blogs encouraging me, they all said the first few minutes were the hardest, until the eye adjusts. So I tried not to cry while we waited, I held his arms and he screamed in frantic terror, trying to rip the patch off.

Max loves being thrown up in the air and caught so I did it reflexively and then heard another voice in my head, my gynecologist who had just repaired a bladder issue that happened when Max was born. Having put the surgery off until I felt we had all Max's needs addressed, I had waited until I thought I would be able to not have to lift him for a few weeks. I was not supposed to lift more than 10 pounds. Max is 32 pounds.

"Throw me, mama. Again! Throw me!" he said as he giggled, momentarily forgetting about his patch. So I threw him, silently apologizing to my doctor in my head.

And we did that until my arms ached and he pointed to some empty hot tub chemical bottles he likes to play with, all with different colored lids.

"I play blue one, mama," he said.

"You CAN see, Max!" I said as I showered him with kisses and drizzled him with tears.

This is my little man, Max. He was a perfect little mexican jumping bean on our first prenatal ultrasound. He was perfectly snuggled into the same spot his older sisters were on his later ultrasounds, making it hard for them to see his whole heart. The high-risk obstetrician did an ultrasound himself and said: "He's a keeper."

So when he was born and they told me he had a huge hole in his heart, I was sure they were wrong. Sure it was nothing. Sure that modern medicine would not let me down that terribly.

But they weren't wrong, it was a hole. The cardiac surgeon said it "looked like he was trying to have Tetralogy of Fallot but couldn't quite get there." He had to undergo open-heart surgery at 4 months of age.

It took me almost a year to recover after his surgery, but I finally went back to work. Then I gradually began talking about the little divot he had in his upper lip. I'd tried to wish it away as part of his sucking blisters but as he grew it just seemed bigger. No one had ever mentioned it to me, but I was wondering if he had an actual cleft in his upper lip.

"He has a forme fruste cleft lip," the plastic surgeon told us. He said it was as if he was trying to have a midline cleft lip but didn't get there. And so he had that repaired last December. I was terrified, certain that something would go wrong and simultaneously worried that if nothing went wrong, it would mean this was the "good" surgery and he would inevitably need another heart surgery later that would be the "bad" surgery.

So when nothing happened, we celebrated as a family by taking our first international vacation since he was born - a trip to Costa Rica. All three kids got some sort of pneumonia while we were there, but we treated them and they all got better. I started to feel like I had my parenting boat legs back. I began to remember what I had felt like as a mommy before Max was born. I began to remember what it was like to not be terrified about your child's health all the time. It seemed like we had Max's congenital problems sorted out. Now we could enjoy him. Now I needed to start being as strict with him as the other children. Now we got to move forward as a happy family of five. Soon, I was sure, I would be no more worried about him than I was about the girls.

And then the girls had their annual check ups. Max wanted attention so I grabbed the opthalmascope and played "peek-a-boo" with him with the light like I do when I'm doing an eye exam. And there it was. A huge black dot in the middle of his right pupil. Certain this was a tumor, I scooped him up and took him to the eye doctor.

Apparently, he has a "forme fruste" version of a congenital eye disorder: posterior hyperplastic vitreous. They don't think it is a tumor, but I have to take him to the pediatric retinal specialist. And now I am terrified again. Now he could lose vision in one eye. We have to patch his good eye and make him wear glasses. And perhaps scariest of all, we have to go to the genetics clinic to find out if my son fits one of the known syndrome associated with genetic disorders. Three strikes and you're out. Out in the outfield of pediatric genetic disorders.

How am I supposed to not be afraid?