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?