A Happy Spring

So it's softball season again. Last year during softball season, Max seemed so frail. We had just found out about his cataract and I was terminally terrified, waiting for the other foot to fall. What else was coming? What would be wrong next? So fiercely in love with Max, I was equally aware that I had no control over where these surprise birth "defects" ended.

Now, a year later, we have stopped patching his weak eye entirely. He hated it. And at our last pediatric ophthalmologist appointment, he said that patching was unlikely to make a difference. I was horrified at first, horrified by the idea that nothing could be done to strengthen that eye. But somewhere between Mexico & the snow drops sprouting, I realized it was me that needed to get stronger, not Max's eye. I read a quote yesterday that said: "It never gets easier. You just get stronger." Maybe that is true. Maybe we just get stronger so gradually, it's impossible to tell when it happened.

I just know that right now I am bursting with pride as I watch my three year old son charge around the playground. He is so happy, so strong, so amazing. Absorbing every second of Max's beaming joy, every ounce of sunshine on this wonderful day is pure heaven. Watching Max careen around in circles on the playground is money in the bank. Maybe someday, we will have another terrifying hurdle to cross and will have to make a withdrawal. But I am not going to think about that now. I miss these beautiful moments if I let my mind marinate too long in the maybes. Let me never forget this moment, the warm evening sun, the sound of Max's sweet three year old voice calling to me. I will tuck it all safely in my heart & save it, let it earn interest, just in case I need it someday.


I wonder if life would feel this rich, if beauty would be this palpable, if Max had not been born with a hole in his heart. It's as if the visible hole in his heart has the power to heal the invisible one in mine.

Reclaiming Joy

We went to Mexico for 10 days of family vacation. I brought every medication I could think of that Max might need, just in case. I love that he has his own passport and that this was his second international trip before he even turned three. He absolutely loves flying on airplanes and going to airports. When we had to ride the air-train to go between terminals, he was simply delighted, exclaiming about the doors and lights and track and making all the  weary travelers smile. This is what we wanted for him before we found out about his health issues.

We stayed at a beautiful villa right on the beach just north of Tulum. We only skipped the patch on our two travel days. Patching for a single hour each day seems easier. Although that hour goes so slowly that I can’t imagine how we used to patch for six!

My attitude to patching and this whole eye issue has changed. I am determined to simply enjoy my Max, just the way he is and stop worrying about trying to make that eye stronger. I am trying to stop worrying about what I might have done or not done to let this happen in utero. Or whether it would have mattered if I had found the spot on his eye earlier. 

Our new patching routine is something like this: first, he likes to snuggle up with me, then eats one (or more!) Lindt truffles as I put on the patch. Our nanny figured out that helped reduce the crying. And then I put on whatever he requests and we watch cartoons together. An hour is just four Firman Sam or Doc McStuffins episodes. We can do that. We count them down together. 

“Mommy, I can’t see,” he says. I try not to panic but just take a deep breath. 

" I know, sweetie," I say calmly as I try to imagine what he means: that using that eye is like trying to see when you are swimming through a murky water without goggles. It’s hard and a little scary. Especially when he reaches out to hold my face for reassurance. But all I can do is be there with him and reassure him. I can’t fix it but I can help him through it. Because as our Smart Man consultant said, maintaining that minimal vision could change his life if anything ever happened to his good eye.

Now, when I see him squint his weak eye, I think of how the glare from the snow and ice  hurts my normal eyes. Cataracts cause glare from normal light sources so I make sure to have an assortment of sunglasses for him to choose from. He didn’t want to wear them at first, but then I pointed out how Tom in Firman Sam wears sunglasses to fly his helicopter. 

“Maybe,” I say, “if you practice wearing sunglasses, someday you can fly a helicopter too.”

This was even more important during the day in Mexico. One day, we went outside on the beach for a walk while the patch was on. We both heard a helicopter but at first couldn’t see it. The it appeared close over our heads.

“Max, look! The helicopter!” I exclaimed and pointed, turning him so he could see it. He looked intently at where I was pointing.

“I can’t see it, Mommy,” he said.

I ripped the patch off, a small piece of my heart breaking off at the idea that he could not see what I saw so clearly.

“I see it Mommy, I see it!” he happily announced. We watched it disappear. I gratefully absorbed Max's stories about where he thought they were going and what the "hepicoper" was doing in his sweet little voice. And then he allowed me to replace the patch for the remainder of the hour.

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!