Noah's Road

I wonder sometimes how many times my heart can be broken? It is broken every time Noah has a seizure. It is broken when I learn how far behind he is developmentally. It is broken when Avry looks into my eyes so deeply and I remember what it felt like when Noah made good eye contact – something we seldom see because of his vision issues. It is broken when a neurologist muddles vocabulary or speaks his mind freely, giving rise not just to heartache but to anxiety so intense my body temperature soars. In the midst of arranging admission to Johns Hopkins’ Keto Clinic, the neurologist there suggested that Noah might have Infantile Spasms, a form of epilepsy that can often result in mental retardation if it is not treated quickly, though it is notoriously difficult to treat. This didn’t make sense. After frantic calls and emails, I finally got a hold of our neurologist. He viewed Noah differently but could see where the other neurologist was coming from. To him, it was just a matter of terminology. To me, it’s a matter of a mental state, something that is always at the forefront of my mind. I will always wonder – until it’s clear I guess – whether Noah is going to be mentally challenged.

“It is such a grim prognosis,” I said to our current neurologist.

“Noah’s prognosis is already grim,” he said, “because of his massive head injury.”

Oh? I sat down on the wet pavement. I had never thought of it that way. No one had ever been so bold to explain it that way, except for Dr. House a year ago, and he was consequently barred from our hospital room.

This was an attempt by our neurologist, I believe, to calm me, to quell the beast of fear who was sharpening her claws in my chest. Though I suppose he has a point. The neurologists who saw Noah’s MRI in the hospital were certain he might not walk, that one side of his body would be stiff, and frankly, I’m not sure what dark future they believed Noah might have mentally. But within weeks Noah was obliterating the preconceived ideas doctors had about his improvement. Noah is now 19 months and just tested out of physical therapy. He is, for his physical therapist, Debi, the very first shaken baby she has treated who has walked. And now he is learning to run.

And so I try to step over the lines that have been drawn by all the doctors, their tests and their statistics. I try to see the miracle Noah is. I fight so hard to continue to hold faith in his recovery. But it is hard. Every day is a battle, and it begins in the first minutes after Noah is awake, as I watch him like a hawk, waiting for his head to drop, waiting for the first seizure to step up. And then the second. And then the third. As I mark them off in Noah’s notebook, as I feed him his special food full with fat, I try to maintain some semblance of a belief that someday Noah’s seizures will be gone. On a good day I can even imagine a future that is filled with more mundane normal than heartache. I can see a day when friends and family don’t hold their breath after asking how we are.

I’m sorry to say, my friends, that today is not that day. In our life great news always takes a beating; bad news gets her way. I’m hoping that for all of you who still follow us and who still pray for Noah, that you will continue your prayers for him. He is magical and he deserves so much more than this cruel world has given him so far.

A wise mother gave me this poem a couple weeks ago when I was feeling down. Mike and I had been – as we often are – struggling with Noah’s seizures and his delays, and we were heartbroken all over again. It comes in waves. For those of you who won’t ever really know what it’s like to be in our shoes (thank God!), despite your wonderful empathy and support, I thought this might help you understand.

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I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

We are at war. Make no mistake about it, inside our New England-style Cape Cod, just down the Potomac from the home of George Washington – the man who fought alongside brave and struggling men for freedom and the beginning of our new world – we are fighting the battle of a lifetime. The enemy? Epilepsy.

I have thrust myself into the epilepsy community. I have scoured the internet for support groups and blogs. I have bought and read several books. With this new knowledge and an acceptance that this is OUR fight now, we are trudging forward, feet already sore and tired from the long walk, but prepared, regardless, to fight until we win.

Our weapon of choice right now is the Modified Atkins Diet. It sounds familiar because it is. Skinny women everywhere have touted that their svelte bodies have come from the low-carb, high protein diet that Dr. Atkins made popular about a decade ago. The diet that Noah is on, however, is different. It is similar to the ketogenic diet – a diet so rigid that every gram must be weighed, each gram of food must be consumed, and most importantly, nearly all calories come from fat, with barely any carbs or protein. Think of that cheesecake you love to eat: so delicious, so full of fat and at least a week’s worth of guilt. Well, that cheesecake (sans the graham cracker crust and with Stevia instead of sugar) is a perfect example of a keto meal. Fat. Fat. Fat. The Modified Atkins Diet, like the keto diet, is mostly about fat, but with adequate protein and without the rigid weighing of food.

Noah is quite literally armed with fat. He now walks around the house wielding a bottle of heavy whipping cream. He doesn’t chug it like milk, because mo matter how much sweetener I put in it, no matter whether it’s chocolate and decadent, apparently it’s no match for good old-fashioned milk. But Noah will likely not see milk again for several years. Same goes for rice. And pasta. And bread – basically, all the foods that bring me utter pleasure.

I grieved for Noah before we put him on this diet. I cried at the idea of him not eating mashed potatoes. Oh God, it seemed so terrible. But is it? Really? No. What is much worse is watching Noah run up to me with a  toothy grin, then watching, helpless, as his blonde head bobs in front of me. He loses his balance and teeters to the floor. I poke him and laugh. “Oops!” I say in a high-pitched, fun voice. He’ll look at me with those blue eyes, their sparkle disappearing from the anti-seizure meds, and he’ll smile back. Big, white teeth, and so damn cute it hurts. I feel so full of love, and yet so empty in those moments. Those moments have come between ten and 18 times a day for months, and months. His record for seizures in a day is 32.

Armed with oil, butter, mayo, and cream – and still that glimmer of hope – we are leading Noah through this war. We’ve seen such an improvement in him. For the most part, his seizures have decreased by about 50%. He’s brighter, happier, and more vocal. Unfortunately we’re also dealing with dehydration, which is a side affect of this diet and needs to be carefully managed. It’s a constant concern, unending stress. But just a small battle in this war against epilepsy, a war so many others are also fighting. Noah is at the front lines with an ear infection, a cold, and some mean, mean molars breaking through. But you know what? That amazing little boy is still smiling. Still laughing.

So, maybe we’re not leading Noah through this battle. We have his back, we are his protectors. But it seems that Noah is leading us, armed with a smile.

***For more information about the Ketogenic Diet or the Modified Atkins Diet, we have posted new links.

In nine days, Noah will be 18 months old. He’s tall and lanky, with a cowlick on the back of his head that makes his hair stand up like a British rock star. His feet are huge, and we’re certain he has my brother’s random tall gene, which means he’ll be taller than his Daddy, making the teenage years all the more interesting. Because of the damage to his vision, he tilts his head and moves it side to side to catch a better view at something – or maybe to see how light changes what he’s looking at – and every time he does this he reminds me of Stevie Wonder. It’s such a quirky quality that makes him different from everyone around him. It’s also a reminder of how he’s been forced to adjust after life threw him a curveball at four and a half months old. I worry that when Noah’s old enough, children in school will make fun of him because of how he’s different. Children don’t see quirky. They see weird. Different isn’t something they cherish. It’s something they condemn.

Because our house is outfitted with a bright tent, a blue tunnel that Noah can crawl through, rice and ball pits for sensory stimulation, and many, many toys, Noah isn’t often immersed in an environment with children. We tried Gymboree; in fact I wasted more than $300 on membership fees and we missed all the classes. Therapy sessions, drug reactions, seizures, and naps all made it impossible to attend the classes full of children, climbing and songs. It took me months to cancel the membership because I hated to admit that something so normal was too hard to fit into our life. I wanted that normalcy for Noah. Now, in conjunction with the therapists who come to our house to work with Noah, we spend hours working with him ourselves. We sit him in the tent with a little table over his legs and work with him on focusing and fine-motor skills. The other day I clapped so hard my hands hurt, all because Noah pulled a toy out of a small bucket and then he put it back in. We’d been working on that for months. He had no idea why I was so excited. After all, he’d only dropped a toy in a silly plastic bucket. What’s the big deal, Mom?!

When, on occasion, we get Noah together with the children who are his age, I am instantly aware of how different Noah is. His Stevie Wonder habit, how he walks or runs with his head down, how he never points to our cat and jabbers, all of those quirks are highlighted. First I feel sad that Noah is different. Then I feel guilty for being sad – because Noah doesn’t deserve that. As his Mom, I can’t be sad about who he is. He’s my angel, he’s everything. And so, no matter where I am when these emotions pummel me, I walk to Noah, pick him up, and hold him as tight as I can. Eventually he’ll push his slender arms against me, almost as though he’s saying, “Mom, don’t bug me!” And he’ll go back to pulling on a string or shaking a ball. My friends know, I think, when I’m feeling this way. You can almost sense their need to make things better for me. But they know they can’t – and so they pretend my boy is like theirs, and we talk about little things. It’s hard on all of us. But I appreciate that my friends haven’t given up on me, despite the fact that I sometimes find it more comforting to stay in our living room with my boys, away from the rest of the world that reminds me of how different we are.

When I was young I was skinny, very, very skinny. As a ten-year-old, twenty years ago, the girls weren’t envious of my metabolism; the boys didn’t think I was cuter or more charming because I was skin and bones. No. I was only different. There was no room for different in elementary school. Kids hurled hurtful words me. Eventually though, I was tougher, hardened with scar tissue. It helped me in the later years when, even though I was made fun of because I was still “different,” I managed to find confidence. I found strength in myself. Without that inner fortitude, who knows how I would handle our life now. Maybe, from the early years of my childhood, I was in training to be Noah’s mom.

What amazes me is that in spite of everything Noah is fighting against right now – continued daily seizures and a new anti-seizure med that has temporarily taken away his ability to walk – he is still breaking down barriers to thrive. Maybe that’s what really makes Noah different. He doesn’t know defeat.

Yesterday, while Noah was finishing his dinner, his father and grandparents hovering over him with giant grins of adoration, I was in the kitchen making our dinner (way less fat than Noah’s Modified Atkins Diet for seizure control). As I whisked our cheese sauce I heard Noah say, “Ma Ma.” It was as clear as could be, with a deliberate “mmmm” sound, and a final smacking of the lips. I dropped the fork and raised my head. When I walked into the family room a second later, Noah’s grandmother was lifting him from his highchair. He had chicken on his face and his hair was slicked back from the grease of the mayo, his cowlick gone wild, rocker style. “Did you hear that?” Mike asked. I nodded, smiling. It was all so clear then. Of course Noah is different. He’ll always be music to his Mama’s ears.

We keep a notebook on our hutch in the family room. It’s a green marble notebook that a hospital staffer gave me a year ago when Noah was in the PICU. On the first page is a letter I wrote to Noah the day he was shaken. I sat Indian-style on the burgundy foldout chair in Noah’s hospital room, the lights from the machines next to Noah blinking, and the pale blue light from the courtyard softly illuminating the notebook. I told Noah how much I loved him, what a joy he had been to me from the moment he came into my world. I’m not sure what I thought would come of the letter. Certainly, I didn’t think it was a good-bye, and luckily, it wasn’t.

On a Wednesday night, two days after Noah was admitted to the hospital, as my mother-in-law and I were settling down for the night, the PICU attending gave us his opinion on Noah’s condition. He told me that Noah would have a seizure disorder and that he likely would always be on medication. He would have learning problems. In a cool, calm manner, hands in and out of his pockets, he shattered my world even more. I had only just begun to wrap my mind around what had happened to Noah, had only just begun to breathe, when this doctor tossed in front of me a future I couldn’t bear to imagine.

I quietly walked into the hallway and called Mike. “He’s saying too much,” I managed. Mike, who had gone home to get a shower, was struggling to understand what I was talking about. I wasn’t crying, yet I could barely speak. “The doctor,” I said. “He’s saying too much.” Mike asked me to hand the phone to the doctor, which I did. After reprimanding him, Mike told him to leave the room, to leave us alone. We asked the hospital to restrict him from coming near us again. I hated him. I couldn’t pass him in the hall without wanting to crawl out of my own skin.

“Dr. House,” as we referred to him, threw me into a dark hole. For the remainder of that night I  fluctuated between hysterical and catatonic. I curled into a ball. My mother held me. My mother-in-law cried beside me. My mom tried to put me to sleep in an empty hospital room in the cancer ward. But I couldn’t sleep. If I let my mind run free, I thought of Noah. I thought of him lying in that room. I didn’t want to breathe any more. It hurt too much. To distract me from thinking about Noah, my mom and mother-in-law stayed with me all night and talked to me about any silly thing they could think of. They talked to me for hours, and hours. The next day I couldn’t go into Noah’s room. I stayed wrapped in a blanket in the waiting room. There was always someone there to talk to me and distract me. I couldn’t be left alone. My mind was not to wander.

Later that morning, the hospital psychiatrist came to me. He brought me into a small room and we talked. Dr. Kronen – who will always have a special place in my heart – helped me learn that I needed to reorganize myself. In a steady voice, his hair tied into a pony tail, he told me I needed to take my gift for analyzing and focusing on the details and use them to regain some sort of control, some element of positive. I took that advice and by that evening, armed with my notebook and after nearly an entire day without the ability to walk into my baby’s room, I stood by Noah’s bed side.

During the next 16 days that Noah was in the hospital, the notebook never left my side. I made it my mission to understand everything that was going on in Noah’s hospital room. I wrote down what machine monitored what. I wrote down every medication he was administered, the time and the dosage. Eventually, all of the family members did this. Once Noah was placed into his second coma and we were taught how to read the EEG, we recorded all of Noah’s seizure activity. It gave us a tremendous amount of power to work as Noah’s advocates. It gave me a purpose. It helped me to stay strong.

A year later, we record every seizure that Noah continues to have in that marble notebook. We have been searching for a drug to control Noah’s myoclonic seizures, which for him are head drops. He’s had as many as 30 a day. Right now, on the fourth drug we’ve tried, he’s averaging around 12 a day. Every day we mark each seizure. The tally is about 450 seizures a month. It can be overwhelming and it is terribly scary, but the notebook empowers us.

If you were to flip through the pages of that notebook, the numbers themselves tell a story – an unhappy one. The seizures haven’t stopped. It is unlikely at this point that another drug will help. But we refuse to give up. Dr. House won’t have the last word, at least not yet.  The next step is the Ketogenic diet, which will be an extraordinary challenge, but if we can control the seizures no cost is too great, no challenge impossible. In a couple months, when we flip through the pages of that notebook, let’s hope the numbers tell a new story, with an ending that reads ZERO.

Around 2:30 on April 20, 2009, Noah was shaken. He’d been crying. He needed something that his daycare provider wasn’t providing him. Maybe he was tired of lying on the mat where she’d had him. Maybe he needed a hug, a laugh, a kind touch. Instead, she picked him up, her fingers gripping him tightly, feeling the softness of his velour pants and his cotton onesie under her fingers, and she shook him.

You know the rest of the story. We have documented it all: the hospital stay; the comas and seizures; the heartache of losing the baby we had known and loving the new Noah; the sleepless nights; reports of brain damage, optic nerve damage, muscle tightness; therapies; fear; anxiety; outrage; a legal battle that threatened to break us. You also know how filled we are with love, how fortunate we feel to have Noah, to love him and hold him, and to watch as he grows, despite the continuous burdens and challenges we all face each day. You know, too, that God has given us another gift: Avry. Avry beams when he looks at his brother, and Noah laughs, jumps, and squeals with excitement when he sees Avry.

Noah has emerged from two comas. He still suffers from seizures. And yet he smiles. He laughs. He is so full of joy, and he has the most beautiful spirit of any child I have ever known. He is walking, which no one thought he’d be able to do in such a short period of time. He loves to eat and he feeds himself – such a simple thing that is huge for us. He said “da da” the other day for the first time, and now he wanders the house smiling, picking up a toy, climbing on a stool, or playing with his drums while saying “da da.”

Today, I refuse to be shackled by the sadness that this day has represented over the last year. I refuse to let my naked baby, death hovering too closely, be the image I choose to remember forever. This is a hard thing to do. But Noah has taught me to move through each day with a smile, despite the weight of my burdens and challenges. My fighting angel is boxing his way through life. So will I. Who’s joining me? We’ll continue to walk down Noah’s Road – all the hills and tough pavement – together.

In honor of Noah and all other abused children, please join us in a moment of prayer (or silence) today at 2:30. Wherever you find yourself, please bow your head for all the fighting angels out there.

Yesterday I spent the entire day with the boys. It was a gorgeous, sunny day. We walked, played, cuddled and loved. I felt content, in the midst of a calm. And then today the rain came. And like every ounce of happiness that seems to come into our life, it drained away.

Not only has Noah been diagnosed with epilepsy in the last couple weeks, not only is he still having seizures despite two weeks on this “last chance” drug, but now he’s considered nearly a year behind in his communication and language skills. You might think this should have been obvious to me, but it wasn’t. I talk to Noah non-stop, articulating every thing I do. I sing to him. We play videos meant to encourage language development. We work on engaging Noah in simple play. All around us his peers are saying “Mama” and “Dada”, they are pointing at objects and either jabbering or correcting saying what they see. This doesn’t happen in our house. In our house we cheer if Noah makes any sound.

I’ve known Noah is behind, but knowing that he’s at a seven-month level is more than just disappointing, it’s crushing. It’s the kind of news that, coupled with the medical diagnoses, is just too much to bear.

And yet Mike and I have the weight of doing everything we can to help Noah excel in any way he can. We have outfitted half our family room as a play and therapy zone. We have set up a tent, a ball pit, mirrors, and games. The goal is sensory integration and interactive play. Those who come in and out of our lives, those who rate Noah on a standardized scale can never understand that weight, or the heartbreak that accompanies it, or the anger that we have been unfairly thrust into this world we now live in.

But what else can we do but work off that depressing, standardized scale? What else can we do but trudge forward, our back hunched over from the sadness and frustration?

Nothing.

As I cried on the way home from therapy today, I looked into the backseat at Noah in his car seat. He has a cold, so snot was streaming from his nose, poor thing. He was looking out the window. I called his name.

He looked at me and smiled.

I waved and said, “Hi!”

He kicked his legs and said something like, “Ga!”

I squealed in return, and then I turned back to the road, to a line of highway traffic in front of me. The windshield wipers swished across the glass. I wiped my eyes and drove forward.

Today we dug through our closets to find something decent to wear and we dug into our hearts to again find the strength and the words to express our losses to the Judge, with the great weight of hope that she would hand down the jury’s recommended sentence to Trudy. Mike didn’t sleep for several nights. For the last week I kept obsessing over menial things in an attempt to forego the inevitable emotional exhaustion that would follow today. Because I’m too paranoid to have my boys watched by anyone other than those who know them well, we had three – not just one – but three close friends watch over them. One of my closest friends brought her little girl over (she’s only 17 days older than Noah but already has a handful of words, while Noah is only babbling on occasion). And so, while we were recounting the darkest moments of the last year, Noah was at least smiling and taking a tour of the neighborhood in our Radio Flyer wagon with his little girlfriend with the curly brown hair. I hear they played toddler footsie! That knowledge gave me peace as Mike and I gave our victim impact statements, and as we sat in the courtroom listening to the character testimony about Trudy.

I can’t attempt to express all that I have felt through this trial, and now in knowing that this legal chapter is over. (I know an appeal will be in the works, but I can’t focus my energy on that.) Crying is my day job; I should get paid for it. But I haven’t just cried at what Noah has lost, what I have lost, what my dear husband and our family have lost. I have cried several times because it saddens me so greatly that the woman I trusted with all my heart – the woman I raved about to everyone I knew, who seemed to dote on Noah – is in jail because she shook my son. When the detectives told Mike and me last April that she had lifted her arms and, holding a baby doll, illustrated how she shook Noah, I bawled. It wasn’t just because my son was lying down the hall, having just emerged from a coma, but it was because someone I had cared about so greatly had betrayed me. I had believed in her before then. Mike had to console me I was so unhinged, though I know he was angry with me for crying over the woman who had clearly admitted to harming my son.

Today I thought about that old version of myself – young, naïve, trusting – when I listened to the testimony of two women who spoke about how wonderfully Trudy had cared for their children over the years. One of them, I wonder if she realizes, I called as a reference more than a year ago. Only yesterday I watched her on a January Peruvian news story about Trudy. She sat in her house with her two boys, one of them rambunctious and wearing a superhero costume, and she spoke again of Trudy’s character. Would she be so certain if it was her trust that had been shattered? One of Trudy’s defense attorneys asked each of these women today whether they would still entrust their children to Trudy, despite the fact that a jury found her guilty. They each said yes, enthusiastically. I don’t know these women and yet I am angry that they could be so naïve. But they are fortunate to afford such naiveté. I wish I still had mine. 

In the blog “The Verdict” I wrote about Trudy’s family. Today Trudy’s husband spoke. He has expressive, soulful brown eyes. The anguish he feels for his daughters and his wife resonated throughout the courtroom. He is a victim in this as well. And though I temper anger with him for supporting his wife, as he is her greatest advocate, I also feel as though I understand where he is coming from. Who would believe the person they have dedicated their life to could be capable of something so vile? Who would want to? Likewise, though I’m sure he harbors resentment towards us, I believe that he feels for us and for Noah. There is so much that weighs on him as well, maybe more than I can ever comprehend, even in my most lucid and empathetic moments.

Two families are shattered, a “tragedy” the Judge correctly acknowledged – but a tragedy at the hands of one woman. The jury, back in January, recommended a sentence of ten and a half years. There were moments today when Mike and I feared that she wouldn’t get that sentence. But the court did not let us down. The Judge gave Trudy the full ten and a half years. This sentence doesn’t change our life, and more importantly, it doesn’t change Noah’s. But at least it is an appropriate end to this terrible chapter of this very long story. Tonight, aside from the wakings of our gorgeous newborn boy, we will sleep. Thank God.

After months of dealing with myoclonic seizures, several different medications, three short EEG’s and one, long, terrible EEG, Noah’s final sentence has been handed down: he has been diagnosed as an epileptic, likely never to be taken off strong medications, and with a future that will forever hang in the balance. Should this latest drug not work, we are left with few obvious drug options, something that terrifies Mike and me.

Never for a moment, in the midst of all the recent doctors’ appointments, or while recording the 20 or more head drops in a daily journal, have we forgotten who gave Noah this sentence. Her name is Trudy Munoz Rueda. In January, after testimony that spanned nearly seven full days, she was convicted by a jury of her peers. Some people have questioned whether the jury was truly one of her peers; I assure you it was, as several of the jury members are parents, just as she is. The jury, after giving up nearly two weeks of their lives, convicted Trudy and suggested a sentence of 10.5 years. My family would have loved to see her sentenced to the full 15, but we understand that the jury members deliberated and came to the sentence based on what they saw and heard in court. We will trust in that.

This Friday, April 9th, is the end to this long and heart-wrenching chapter in Noah’s Road. The Judge will take into consideration the jury’s sentence. She will read and hear the victim impact statements that our family has submitted. She will read and hear statements from Trudy’s family. She will make a decision that will dramatically affect two families.

We invite everyone who has grown to love Noah to come to the courthouse to support us in this final stand for justice. Please help to show the Judge how much Noah is loved and how your lives have been affected by his struggles. Noah has already been given a final sentence. It was handed down by Trudy Munoz. Please pray and show support in the hopes that the Judge will give Trudy the maximum sentence. We all know it is far easier than the future Noah has in store.

Final Sentencing Details:

April 9

2:00 PM

Fairfax County Judicial Center

4110 Chain Bridge Road

Fairfax, Virginia 2203

*The courtroom is still unknown, but upon entering, if you give the name Trudy Munoz Rueda, you will be told where to go.

When Noah was rushed to the hospital by ambulance nearly a year ago, on April 20, he was in the midst of a catatonic seizure. The paramedics were unable to get the seizure under control, and it wasn’t until he was in the emergency room at INOVA that the doctors were able to stabilize him. The damage from the shaking was so extensive that seizures ravaged his little body for days. For this reason Noah was put into two separate medically induced comas to allow his brain to rest, with the hope that the seizures might stop. He was hooked up to an EEG and his head was bandaged. As my best friend recently wrote, “He looked like a Frankenstein baby.” It’s true. There was nothing innocent and precious about him anymore; he was tragic, his face pale and his eyes crusted with old tears. Noah was hooked up to the EEG for more than five days. In that period of time we never left his side. Our friends and family learned how to read the EEG, to recognize what a seizure looked like so that they could push the event button should they see one. Sometimes it was obvious when Noah was having a seizure. His eyes rapidly would open wide, but they were vacant. After a minute or two they would close again. It was terrifying to watch. If you look at the pictures we have posted on the site, you can see what Noah looked like then. Every once in a while I will glance through my pictures on my computer and accidentally stumble across one of those old photos from the hospital. It’s hard to imagine that little boy, that lifeless bandaged creature is my baby.

Last week, however, I didn’t need to look at old pictures from a year ago to revisit any of those dark memories. In an effort to get the seizures that Noah continues to have under control, his neurologist ordered a 24-hour video EEG. We checked into Children’s National Medical Center at 1 PM on Wednesday. Noah was in a great mood and had been all day. Though he continued to have head drop seizures – the usual 20 a day – he laughed and smiled, eating snacks while we waited. But hours later that happy toddler was gone. Noah had dozens of leads stuck to his blonde hair with paste and his head was covered with several layers of bandages. A white tube covered his head and the wires hung from the top, connected to a 30-foot wire. Video cameras were positioned in the hospital room so the doctors could watch Noah’s activity as he had seizures that were monitored on the EEG.

Within hours Noah was inconsolable. His face was swollen and red, tearstained. He wouldn’t eat, even though I’d prepared snacks and easy meals that could be microwaved (I didn’t want him to have terrible hospital food). Mike and I tried playing with him, walking with him, holding him and rocking him. He had moments when he’d smile, and in those moments Mike and I could breathe. But for the most part Noah was miserable. We threatened to leave the hospital in the middle of the night because we couldn’t bare him being in so much pain. He hadn’t slept. We hadn’t slept. It was the worst night we’ve experienced since Noah was first released from the hospital.

The next day, after the neurologists had finally reviewed the EEG, Noah’s bandages and the leads were removed. His forehead is now covered in circular scabs from where the leads pushed into his soft skin. Days later, he still has dark circles under his eyes from the lack of sleep that night. The doctors have ordered a different drug, but so far we’ve seen no improvement. This could be because Noah is also still on an old drug. We’re awaiting an official visit with his neurologist to discuss where we go from here. In the meantime, Noah is a zombie. He is so tired. He stands and his eyes involuntarily close on him – this is after a nap, when he should be alert and rested. I’m so terrified of ruining Noah’s incredible palate for food (he’ll eat anything from blue cheese to black olives to salmon) that we’re giving Noah his new drug in chocolate pudding. It’s amazing what a parent will do and what rules they’ll break when desperate to get a drug down their little one’s throat. Noah still doesn’t drink juice, as I believe it’s full of unnecessary sugar, and yet he gets a teaspoon of pudding morning and night now! But I’d rather him learn to hate pudding than something nutritious.

That night in the hospital was so reminiscent of Noah’s stay in the PICU that Mike and I were both emotionally closed off. When we were finally rushing out of the hospital, literally moving as fast as our legs would take us, I broke down. I cried with relief that we were leaving. It felt as though we’d been there a week. Those nights in the PICU a year ago felt as though they were only moments before. Our hearts were raw. They still are.

We will never forget what happened to Noah, but sometimes the pain just never seems to cease, especially when we watch Noah miserable and we are helpless. In so many ways we lost control of Noah’s life when he was shaken; the seizures, and his blonde head wrapped in white bandages while he wails is all too terrible a reminder. But I try to remember, even in bleak moments and through the darkest nights, that we are doing everything we can. We might not have control over our lives, not really, but we are taking each day and seizing it, all to make a better life for Noah. That’s all we can do.

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From Mike:

For those who doubt:  (This is a difficult article to read about yet another case of Child Abuse and SBS)

http://www.washingtonpost.com/wp-dyn/content/article/2010/03/29/AR2010032903198.html?hpid=newswell