Noah's Road

Dear friends near and far, prayer warriors, and cheerleaders of my fighting angel from across oceans and around the globe, I have news. And it’s BIG.

I wish you could see me as I type this. Aside from sitting in my typical Indian-style position, I am nearly shaking. I have been thinking about this blog and have been wanting to write this blog for so long, but I am a believer in Murphy’s Law. My son was shaken a year and a half ago, so since then it’s been hard to believe that our family could have any sort of fortune – aside of course, from still having Noah, which has been a great, great gift from God. I see that, and in the Shaken Baby community we’re the lucky ones, but in others’ eyes we’re the people you think, “Thank goodness we’re not them!” We’ve been battling vision issues and severe developmental delays, but all that time I’ve thought how easy life could be if we didn’t have the seizures. We have accepted our fate and our life, but watching Noah’s head drop dozens of times a day, watching him doped up on drugs, being helpless day in and day out, has  been a nightmare.

On August 2nd Noah started the ketogenic diet. This diet is like no other. It is 90% fat and low carb. We weigh every gram of food that Noah eats. (For some perspective, he gets about 36 grams of fat per meal, 4 grams of protein, and 4 grams of carb.) So, there’s no more restaurants, no more cookies or cupcakes, no more tossing leftovers on his tray and letting him go at it.

But guess what? 17 days into the diet and NO MORE SEIZURES! Noah has now been seizure-free for 36 and a half days. For 36 days I have been able to write ZERO.

Here comes the panic. The need to knock on wood, cross fingers and toes, or better yet, hit my knees and pray that they never come back. I am part of a wonderful community of parents who suffer just as we do, parents whose children have various forms of epilepsy, and I have learned from them that this seizure freedom could be short-lived. It might be gone tomorrow.

In the meantime, while there is no celebrating with champagne or toasting with wine, we in the Whitmer house are as overjoyed as we’ve been in a long time. A long, long time. We take this joy and we keep it inside. I let it motivate me towards cooking two hours almost every night, preparing a couple days’ worth of meals for Noah. This joy gives me unending patience while Noah tosses my food onto the floor because he’s going through a – yay! – toddler phase. Mike is down on the floor playing with the boys and smiling. I haven’t seen his face brighten like that  since just before Noah was shaken.

And Noah. Dear, precious Noah. He is reinventing life, exploring his world for the first time. He can focus now and is playing with his toys longer. He is throwing everything in sight, loving to hear the different sounds a remote, or a toy, a ball, or a cell phone – yikes! – makes as it hits our wooden floor. He is jabbering as he eats or spits out the food I’ve made for him. He’s hugging his brother and kissing him on the forehead. He mostly ignores Mike and me now – too busy for the lovey parents, too much to do in his little world, and so little time when the lights are turned out at 6 PM every night! He is magic. And all because of this magic diet.

It’s not coincidental, I think, that a local church held a prayer service for Noah within a day or two of Noah going seizure free. Nor is it a fluke that after a year, countless sad blogs by me, and thousands of prayer warriors from around the world reading my posts and praying for Noah, that we have more hope than ever for a future. I am humbled. I am thankful. Please keep the prayers and well-wishes coming, and let’s see where Noah will take us on this journey. Sheesh, it’s been a rollercoaster. But  we’re smiling, at least  for now, as we go up hill!

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.

***
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.