Noah's Road

I find myself working so much more often than I do actually relishing in my children these days. Sure, you say, of course. Most moms do. The ironic fact is that I’m officially a stay-at-home mom, a title that, depending on the day is either the greatest blessing or one big frustrating pain in the neck. Noah is in school four half days a week, while Avry spends most mornings with me, but is in a program of his own two days a week. Three days a week I have a mommy helper come over the afternoon. She takes the boys for walks, feeds them snacks, and generally attempts to keep them from killing each other for a couple hours while I lock myself away upstairs and work to the soundtrack of squeals, screams, and a Sesame Street counting video. It’s an incredible gift to have people to help me, to have a break from my children, especially when they’ve worn me down to a nub and all I can do is eat ice cream in my bed before curling into a ball and sleeping, i.e. last Wednesday.

While I have help I telecommute for my job that I’ve had since before Noah was born and I am writing a book about the Ketogenic Diet and the Modified Atkins Diet. I’ve been mum on mentioning the book because I’m still the kind of gal who’s afraid of the other shoe dropping. But the contract is signed, the book is well under way, and it will be published in December. I am writing the book with a fantastic woman who lives in China and has raised seven children. She makes the days when I’m feeling lazy – or cranky or tired either of working too much or of working too little or of toddler tantrums in general – seem utterly unwarranted of complaint.

This book is something of a gift to myself and to all those people who are fighting epilepsy. The Ketogenic Diet saved Noah. It took his seizing little body and gave it a break. Heaping helpings of fat took him from a dramatically delayed and introverted child and turned him into the precocious, stubborn, and often-amazing child that I like to complain about after he’s terrorized me. I can laugh about it now – because I have my mommy helper here to play with him, but this morning was another story. Let me tell you: Noah delights in making me squirm, in making me feel like I have lost every bit of sanity, and if he can do it with Avry as a willing audience, SCORE! And yet when he signs “sorry” and says, “wahry,” I am reduced to a puddle on the floor.

In the last few months we’ve been dealing with so many behavioral issues with Noah that every step I make as a mother feels like a step backwards. I feel lost more often than I feel I have my footing. I’ve read several discipline books, and the methods work and then don’t work, and I never know whether it’s me as a mother or Noah as a child that is the root of the problem. How do I ever know what is age appropriate versus what is a result of Noah’s brain injury or developmental delay? When do I know that this is an issue greater than those that the average toddler mom deals with? Is this another special needs thing rearing its complicated head?

And then I think, as I steal away to write this book, or as I telecommute for work – or like right now when I’m writing a blog because I can’t focus on either of the other two aforementioned items – if my being locked away from them this often is somehow to blame for these behavioral outbursts. Have I taken to finding my place outside of this home too soon? Is this what is sounds like, the working mom’s dilemma creeping into my lovely white house? Do I work less during the day and work more at night? Do I put on my cape and become Super Woman? Surely I can’t clone myself; that would spark far too much controversy. I’d hate to read someone venting about it on Facebook. You know the posts; you think, sheesh, glad that wasn’t directed at me!

I could wrap up this blog nicely, organized, with a theme I’ve gently hammered onto the page, but that would require some cohesion of thought that has completely gone AWOL. Instead I might ask yet another question: how do you split yourself into all the women you want to be?

Over the last several months I have made a conscious decision to post less and less on this blog. Though this blog has saved me in so many ways by providing me with an outlet for both my heartache and my joy, and an incredible forum for Noah’s prayer warriors to cheer us on, ultimately this blog also makes it a challenge to move on from what has happened to us. We now live in a new place, full of paths lined with trees instead of ghosts, with a home big enough to house all the smiles and laughter that fills each day, and with a future that we are creating instead of a past that never seems to lose its grasp. And yet, whenever I return to Noah’s Road I am ever reminded of why we began this blog, of that moment I first began to type, as my baby lay in a coma and I sat with a tear-stained face and began to pour my heart out. Whenever I return to Noah’s Road I find my way back to the past instead of moving towards a future that once seemed so dark, but now, thank God, is silver-lined.

In the months I have kept my distance from here I have learned happiness that I had at one point all but given up on. And, Mike, my dear husband who once epitomized broken, has laugh lines around his eyes and wrestling matches with Noah on the floor of the boys’ playroom. On our quiet country property, Mike takes the boys for rides on the tractor and we walk the boys in the red Radio Flyer wagon on the newly paved street up to the horse farm to say “hiyeeeee.” The horses aren’t impressed with us as we are with them; in fact, we can rarely lure them from the field even for carrots – lots and lots of carrots. Noah and Avry move too quickly, their blue and green eyes flashing with utter amazement over the glorious creatures before them. The horses know already that two little boys are more trouble than they’ve bargained for.

We have found a church and a support system in the special needs community that not only makes us feel welcome, but incredibly blessed. For me, it is my friendships with parents of other special needs children that give me the strength and the perspective to move forward with a smile, despite the bad days that happen to us all.

Let me tell you about those occasional bad days: all too often they have nothing to do with having a special needs child. They have nothing to do with this unique journey that God chose for us. Instead, bad days come simply from the challenges of being a mother,  as my precocious, strong-willed boys and their hot-dog-greased fingers decide that all their frustrations –because being 2 and 3 years old is tough work – should be taken out on me. On those days Time Out is the equivalent of a four-letter word to all of us. And we say it a lot. When Mike comes home from work, as the boys cling to him like Saran Wrap, I dramatically whine about how I’ve been tortured, and yet I know too well that these are the moments I will someday miss. I know, too, that these moments are the answers to prayers we’ve said too many times. “Please God,” I’ve asked in the past, “let my Noah drive me crazy, just give him the chance to drive me nuts.” Well, AMEN. These days are simply the best I have ever known.

In August of 2009, under the post A Request for Prayers Mike wrote: “I want nothing more than my child to come up to me and say, ‘Welcome home, daddy, I love you.”’ But I’m not sure I will ever hear those words.” Though Noah is still very behind speech-wise, Mike’s dream has all but come true. Not only does Noah come running to the door when he hears the knob turn and click, but Avry does too. Both boys reach their arms up to Mike, squealing “Daddeeeee” in their sweetly shrill voices, full of grand excitement. And then, while sitting on Mike’s lap, Noah will extend his arm in my direction and say, “Mama!” as if showing me off. He smiles, hugs his father, and looks at me with beaming eyes.

In the time I have been away from Noah’s Road I have been relishing in every exhausting moment of raising two toddler boys. Who knew boys could dirty so many clothes and dishes?

I have also been brainstorming ways that I can continue to blog, but in a forum that allows me to let go some of the past and concentrate on the future, just like I do within the hours of my days. I have been diligently working on projects that I hope will bring other parents the resources that we have relied upon as a special needs family, especially the Ketogenic Diet, which has been our miracle. Noah has been seizure free now for 1 year and 5 months. He’s been medication free since Father’s Day. Maybe I’ll change the direction of Noah’s Road as my journey is shifting, or perhaps I will link a new blog to this one. It is all up in the air right now; I’m waiting to know in my heart which road I am meant to travel. I do know that as my schedule opens up with the boys starting school, I intend to put much more time into advocating the Ketogenic Diet and towards bringing parents who have lost their way, and maybe their hope, back into the light. Because even the darkest of clouds can dissipate, letting sweet, soft light shimmer through the haze.

We will always be in the midst of this Shaken Baby storm. We were tossed into the wind two and a half years ago. This storm that comes with Shaken Baby Syndrome – or abusive head trauma or being with the wrong person at the wrong time, whatever you want to call it – has moments so quiet you can barely feel a breeze, while other moments are so turbulent you’d lose your heart if it wasn’t secured within the cavities of your chest. I’m a part of this world, a constant no matter the forecast, because I have chosen to be. I blog because it gives me purpose and provides me with some sort of catharsis. But I also blog because I have seen a community built upon this blog; it started with words, emails, kind thoughts and gifts sent across the country, and it continues as we give virtual hugs, or if we’re close enough, a hug so tight you can feel the heat rise from your friend’s skin. We have grown. There are so many of us. That in itself is a tragedy.

In the last few weeks, so much has happened within our network of mommies, daddies, grandmothers and aunts. Dear friends of ours, whose daughter was shaken two years ago, have finally been given a trial date. We hope and pray that this date sticks. I’m hoping that the fact it is on Noah’s birthday (and dear Trevor Ulrich’s birthday) is a positive sign.  I still remember reading this mom’s words as we exchanged emails two years ago. Her daughter was still in the hospital and she was so angry, confused, isolated; through those hazy lines on the computer I could feel her desperation, and yet I could do nothing to curb it.

Somewhere on the East Coast the daycare provider who shook a baby nearly exactly Noah’s age, and within a month of Noah’s shaking, is finally undergoing trial. I should say that this sweet baby boy’s family finally has the chance to bring some justice home. They have waited so long and have traveled so far to sit in a courtroom and have the darkest moments of their life spilled before them like rotting trash. Even the big steps, the good steps, can suck.

And, God this breaks my heart, we have added yet another family to our small community of brokenhearted parents searching out the light in a world that tried to snuff out our children. Last week a sweet boy named Austin Westbrook was shaken. He is three months old. So far he’s hanging on. He’s made progress. He can suck on his pacifier and has finally left the PICU, but his vision, just like Noah’s, is a huge question mark. His parents, bless their hearts, are trying to fathom their new life, they are holding tight to faith and to hope. But that will become harder as the reality of this new life sinks in. For this reason I am asking all of the amazing prayer warriors who still visit Noah’s Road to add baby Austin and his parents to your prayer lists. They need prayers today, and they will need them every day for years to come.

Today we learned, finally, that Trudy’s appeal to the Virginia Supreme Court has been denied. If you recall, she was up for the second round of appeals around the time the New York Times article ran, which she was also denied. I’ve been waiting in anticipation of this, fearful deep down that it could all come crashing down on us again. When Mike told me tonight, Noah, Avry and their two little friends were making a disaster area of the playroom – life per the usual. (Well, truth be told, MY kids make the mess and my dear friend Maria’s kiddos were just trying to survive in the chaos, not to mention the hair pulling and biting.) Mike watched me, waiting for my response, and I let out a small yelp, a little yippee and a grin far too large for the kind of hefty news that this really is. I am thrilled, but as I’ve said before, the happiest moments are singed with sadness. This happy moment, just like many many others, is really just a reminder, another reminder of what we’ve been through, and a reminder that we are not alone in this.

It’s hard to imagine I have only posted a handful of times in the last year. Mike is always asking me when I will write another blog. “Soon,” I tell him, or “When I know what I want to say.” Mike has candidly confessed to me that he wishes I wasn’t so writerly and that I could just post some simple updates, type a few words here and there, share something rather than let the several hundred faithful readers we have go without something about our dear, fighting boy. Yes, it’s true. I should do that. But in some ways that would be like trying to recreate myself and I think I’ve gone through enough personality transformations in the last couple years. (Those of you who know me all too well: please try to nod your head a little less enthusiastically at this comment!) Now that I’ve gotten my nearly annual apology out for not writing enough, let me delve into all that I have to share. In the last several months we have done the following:

1. We packed up all our junk in our tiny Alexandria home and put it on the market.

2. We dealt with many last-minute home showings, resulting in chaotic dinners at our local Panera Bread, where they have a microwave to heat Noah’s keto meals and where I can leave some of the mess behind. Now, mind you, I did take great pains to clean up everything, even the smashed avocado on the floor.

3. We sold our little home, the one my hubby renovated from top to bottom, in only six weeks, packing our life into a rectangular storage unit.

4. We moved into my parents’ house for six weeks while our new home was being built.

5. After taking away every moment of silence my parents had grown accustomed to since their children had moved away, and after all lamps, small tables, and anything sharp or glass had been hidden, we took all our stuff and our wild-haired toddlers and we moved into our new house in the country.

6. We now live closer to Richmond than Washington, DC. Our home has a main floor so large that Avry rides his little bike around the house. The house sits on more than two acres and the boys spend every afternoon running in and out of ditches and across the bright green grass that is just beginning to sprout, Noah awkward but full of laughs, Avry with his fierce red hair and toothy grin.

7. Noah is now in special education preschool four days a week and I’m pretty sure he loves every minute of it. He says “dool” for school. His hair is cut short now and I’ve found a hair gel that is keto friendly, so my little Noah goes to his new school with rock star hair and the graphic T-shirts I can’t get enough of. You should see this kid in his Transformers T-shirt, his torn jeans and choppy, spikey hair – you’d think he was in an ‘80’s punk band, not a child who spends everyday overcoming more obstacles than most of us can imagine.

8. We drive on completely new roads every day, sometimes making wrong turns and getting lost, but always discovering new territories, new places to make us smile, horses, cows, rows of corn, so many things I never knew I could love as a city girl, so many things that represent a newness in our life. We’ve said goodbye to all the old roads, the ones that remind us of HER, of THEN, of this fight that will never really end.

We are stilling living out of boxes, picking and choosing which parts of the old life are important, which bits we want to bring into this new world, this unflawed journey. There are too many flies here in the country and lots of spiders, so life will never be perfect, but it sure continues to be a blessing.

Let me be perfectly frank: I thought for months that I could give up this blog and never miss it. After the New York Times disaster, the cruel emails and comments, the question of guilt versus innocence, the accusation that I am, as a mother, somehow in part to blame for the controversy that surrounds Shaken Baby Syndrome, I was done. It’s not that I felt the other side had won, it’s not that I believe for a second that the people who dismiss Shaken Baby Syndrome have any credibility, but my blog had suddenly been transformed from a haven of love and support to a means to spread hatred and ignorance. I have two toddlers, Noah who is now two and a half, and Avry who is nearly one and a half. I decided I didn’t want to blog. I wanted to live, put my public self on the shelf for a bit, look for joy in the crevices of everyday life.

And boy, did I find it. I continue to find joy everywhere, with the quietest babble, the goofiest grin, the snuggles that force me to close my eyes because it hurts so good. In the last four months since I’ve posted a blog, Noah has continued to be seizure free. August will be the one year mark. Now, not only is he seizure free, but we have finally weaned him of all anti-seizure medications. I always knew the seizures and drugs were stealing bits and pieces of Noah from us, one head drop at a time, but only after many months of seizure freedom have we been given the chance to really see our little boy. Though still tremendously behind developmentally, Noah’s quirky personality is beginning to shine.

He sits on my lap and looks into my eyes, fluttering his own eyes, dark lashes curled into oblivion. He cracks a smile, sticks out his tongue, and then reaches to touch my own mouth, looking to discover something new. “Mouth,” I say, kissing his fingers. He giggles shyly, as though I’m a girl with pigtails that he has a crush on.

Noah tosses his head back and forth as we ride in the car and listen to The Indigo Girls loudly. There’s something about those chiming voices that he loves. I turn the music down. “More music?” I ask, looking to Noah through the rear-view mirror as I’m stopped at a light. He signs “more” by crashing his two fists together. He squeals when the music fills the car again.

We spend almost every day outside, taking walks in the Radio Flyer wagon, playing at playgrounds, or just running barefoot in our own grassy backyard. Avry, a spontaneously combustible personality, sprints from one flower pot to the next, plucking marigolds out of the dirt and tossing them onto the ground. He laughs, exposing his white teeth, each separated by a perfect, narrow gap. “No,” I say in my best mean mommy voice (which never works) and he runs across the yard. Noah, awkwardly skinny and heavy-footed, follows him. Avry laughs as Noah tackles him and sits on him. Later that afternoon they’ll fight over who gets to hold the sprinkler; Noah will laugh at how Avry crashes into the dirt face-first after going down our tall, red slide; and they’ll suck the water out of the keto-friendly popsicles I’ve made, little fingers tightly gripping the green plastic handles.

We’ve come so far this little family. We’ve sat in courtrooms and in intensive care units. We still shuffle Noah back and forth to five therapies a week. We see other toddlers speak in complete sentences and we sometimes cry – because that’s always going to be hard, being cognizant of what might have been. And while somewhere a panel of Judges with the Virginia Supreme Court is reviewing Trudy’s third petition for appeal, we are playing in the dirt, kissing our babies’ feet, finding joy in the nooks and crannies of a life that once seemed bleak, but that now feels immeasurably full of possibilities.

When I welcomed Emily Bazelon into my home in early November, I trusted her. I let her see and interact with Noah – who I now know has sometimes “vacant” eyes – and I shared with her all the heartache and exhaustive details of the last couple years of our life. Previous to my picking her up from the metro station and taking her into our home, she had told Mike and I on the phone what her intention was with the article. We agreed to do it despite knowing we would hate a great deal of it; after all, she wanted to address the Shaken Baby Syndrome debate. But, we thought, if we could have the chance for people to read our blog, to read our story, to know the truth as we know it, we might have a positive impact on one baby’s life. This, in retrospect, is the same naive bullshit I contrived when convincing myself two years ago that a woman who is little more than a stranger can take loving care of my child.

During the interview and during the repeated pleas to Emily to take care with our story – this is our life and this is our child – she never once told us that she intended to interview Trudy, her lawyers or the medical experts on her side. I should have asked her outright. Why didn’t it occur to me? Because I am naive. There was something about her eyes, warm and dark – not unlike Trudy’s – that made me feel she would work diligently to present the truth. We were told this story would follow more than one case, but at no point was it divulged to us that our story would link these other cases, and that the “medical evidence” in these other cases would be used to cast doubt on Trudy’s guilt, making her a martyr and us who, though never outright stated, could also be responsible.

We found out quite on accident and only a week or so ago that Trudy was in this story. Words can hardly convey our anger. Didn’t we have a right to know that our life and our case, which was settled over five full days of testimony a year ago, were going to be rehashed in a he-said she-said with Bazelon and her deft editing skills at the helm?

Now, just as we had suspected, we are in the midst of this heated battle. Yes, we have done this to ourselves. I accept that, much like I have accepted the occasionally cruel comments in response to my blogging. What I couldn’t have imagined, however, was that Bazelon would turn a minor detail into the thread that weaves much of this article together: Noah and the milk bottle.

“Rueda and Noah’s mother, Erin Whitmer, both noticed when he stopped taking his bottle well and napping as usual in the middle of his fifth month, in April 2009. Whitmer thought this was because Noah had just started eating solid food. She and Rueda talked about it early on April 20, both of them hunched over Noah in his car seat when Whitmer dropped him off.”

This is the beginning of the article, laying the groundwork of manipulative suggestion that there was an underlying condition with Noah, that he was deteriorating, a ticking time-bomb that finally blew when Trudy was alone with him. What she never mentions is that while Noah had often refused his bottle over those last couple days, he had eaten several meals of solid food, to include butternut squash, avocado, oatmeal and even pureed chicken (which he hated). Noah drank a bottle that Monday morning as we sat on the couch together. That is a moment I hold onto still, one of the final moments of another life. Noah was also sleeping through the night, though he had never been a consistent napper. He’d nap 45 minutes one day, more than an hour another, several short naps later in the week.

I don’t know why Noah was fussy with Trudy that day. He was nothing but smiles when I left him. I can’t account for the moments I wasn’t with him. I will tell you: THAT is enough to stifle me with guilt. Tack it on to the long list of the things I carry.

It is not absurd to me that so many people who have read this New York Times magazine article believe Mike and I are idiots. From what the average reader can infer we had a son who -gasp!- wasn’t drinking or sleeping. Why didn’t we know something was wrong? What kind of parents are we? We are also so dimwitted and devoid of the ability to form a cohesive thought on our own that we need to rely on the established research and science of the vast majority of the medical community instead of listening to the sage and well-intentioned handful of doctors and scientists who research and testify only for the benefit of these innocent people accused of this atrocious crime.

Yes, the truth is complex. It melts and freezes, changes shape, fractures, differs with everyone’s recollection. I understand there are two sides to every story, and I understand that there are “experts” (please know I use that term loosely) who vehemently disagree on whether it is possible to shake a baby hard enough to thrust that child into the jaws of death. This is why I knew Bazelon had the duty to share all sides of this debate. She took all the right steps, but as a lawyer, she conveniently left out the details that couldn’t fit within the framework of her mission, which, clearly, is to cast doubt about what is happening to these babies behind closed doors when no one else is present.

I can’t get into the debate because, unlike Bazelon, I recognize it takes more than 8,000 words to adequately present two sides, and moreover, to fairly present the thousands of pages of testimony from our trial in order to show the reader what our jurors saw and heard before they convicted Trudy Munoz.

I think often about one of the studies highlighted in the article in which men and women said they were fine with shaking a dummy baby for the sake of science. And then they shake them. Hard. As hard as they can. Do you think in the back their mind they see their own son or daughter, that they mitigate the force of their shaking subconsciously? If so, who cares? They are shaking dummies. Dummies without brains, blood vessels, tissue, without life. I am haunted recently more than ever by a Japanese woman I read about years ago in a collection of nonfiction writings about Hiroshima and Nagasaki after the atomic bombs were dropped. This woman, whose singed skin hung off the exposed muscle of her body, lifted a cement beam to free her child who was pinned beneath it. Somehow this frail, damaged woman lifted all that weight to save her child. How do you account for that force? People can do incredible things. And they can do disastrous things.

My son wasn’t a ticking time-bomb. He will not be defined by the New York Times’ readership as the baby who didn’t drink a couple bottles and therefore connected the dots in this complex collection of cases. Every case is different. Every baby is different. The truths are not universal. Noah is not just a baby who was shaken; he is more, infinitely more.

I try not to let the fact that Noah was shaken define me, but it’s tough. I blog about it. I write about it. I advocate against it and welcome other parents facing this same nightmare into my life. I carry the burden of knowledge that I put my son in harm’s way by trusting the wrong person. I’ve said all the what-could-have-beens and the what-should-have-beens.

And yet…

I sit on my floor. Noah, now two-years-old, brings me one of his favorites books and he sits on my lap. He looks at the pictures and turns the page when I tell him to. And then Avry, his one-year-old brother, walks up to us, wanting to be in on the action. He tries to turn a page. Noah pushes Avry’s hand away before standing up and fussing, usually tossing the book onto the floor in a fury. Avry stands in awe of what he’s done wrong – again. I play the moderator by trying to balance both boys on my lap while we look at another book. This never works, but I continue to try it anyway.

Today Noah climbed into the front-loading washing machine. He faced outward and balanced himself in the middle, his legs crossed in front of him. He moved his little hands along the bumpy, holey sides, and he smiled.

These are happy moments. And there are many.

Avry has learned to wipe his own nose. We hand him a tissue and say, “Wipe your nose.” He takes the white paper, and with perfectly fat fingers, he moves it back and forth under his nose. This is brilliant to me, that a one-year-old can comprehend a command. Who taught him this? We only began asking him to do this after we had witnessed him doing it himself. This is our first time raising a son who isn’t brain-damaged, who hasn’t had a year of his life taken away by seizures, and months taken away by the fog of medication. What he understands astounds me.

“When do you think Avry will say Mama?” I said to Mike one night recently. “I mean really mean it as Mama, not just babbling.”

“I don’t know,” Mike said. “I’m sure it will be a happy and terribly sad day.”

He says this, of course, because we have never heard Noah say Mama or Dada. I was quiet. I had hoped for a moment to focus on what was good and happy. But there it was again, the sadness that creeps in, sneaky, sneaky sadness. The sadness is there when Avry wipes his nose, when he tries to brush my teeth with his toothbrush, when he does anything that Noah can’t.

On Thursday nights I take a ballet class. I somehow manage to slither into my leotard, put on my canvas ballet flats, and with a group of women who know nothing about my hardships, I dance. I don’t think of my sleeping babies at home. I don’t think about the hours of cooking I’ve already done this week for Noah. I only suck in my belly, keep my butt tight and my head high, and I lose myself. Just to be safe, though, we close the classroom door – to keep that sneaky sadness out.

Wherever we go, whichever doctor or therapist we see, everyone knows that Noah was shaken. We are there because of this. I fight to get my way and argue over his care because it is where I seek to insert my control over a life created, ultimately, because someone lost her control.

Since then I am mom to an epileptic boy who eats a diet of 90% fat and who is skinny as a rail. I’m mom to a child who loves to hug me tight and then bite my bare skin because it feels good to him. I’m mom to a redhead who’s so sweet that he’ll rest his head on the cat’s soft fur for a snuggle before bolting up to chase after his much faster big brother. I’m a mom who reaches out to other moms who I know share my ups because they so intimately share my downs. And I’m a mom who has ostracized myself from most of the people who shared my life before Noah was shaken; it’s too hard to share in their normal, their life that could have been mine.

Clearly I struggle with who I was, who I am, and the image of a mother I’d like to be. Maybe it’s too soon to try and escape what might define me. Perhaps what defines me gives me the greatest power, to share our story, our happiness singed with sadness. Or maybe, I’m just a mom. And that’s what makes me special.

My heart has been heavy today. In fact, in the midst of a meeting at work this morning I broke into an embarrassing sob fest. The more I tried to hold it in, the more the tears overwhelmed me. The only thing that broke the cycle of tears was a phone call home as I stood in the hall at work, Noah and Avry trying to eat the phone on their end while I emphatically said “Hi” between heavy breaths. To say I am sad would be a simplification of an emotional landscape that should probably come with a map. But I’m without a map, navigating through the terrain by my overwrought senses.

I woke this morning knowing today is the day that Gail Dobson, the woman who shook Trevor Ulrich to death in September of 2009, would finally learn her sentence after being convicted in August. I’d been preparing for this day for some time. Rarely does a day go by when I don’t think of Trevor and his mother Kelly, one of the strongest – and funniest – women I have ever met. She is also a gorgeous writer. (See a link to her blog under our links).

I went to the first day of the trial back in August. I made a road trip out of it. I wanted to go as a friend to Kelly, as the mother of a shaken baby, as a fighter against child abusers, and to show Gail Dobson that Trevor has more people watching over his family than she could ever dream of. I sat in the back of the courtroom, miffed at myself for forgetting a pen and notepad and then furious at myself for forgetting tissues. I wound up using an old receipt to wipe my eyes and my nose.  I was sequestered for our trial, so I didn’t have to relive all those moments I fought to forget. I am stronger than I often think, but as I am ever learning, I am also weaker than I often pretend to be. During our trial I watched as our family members emerged after gruelling days of testimony. They heard 911 tapes, saw MRIs of Noah’s brain, images of the daycare room where he was shaken and our life forever altered. Their faces were flat and pale.

What I heard that day in a small country courtroom in August will haunt me forever. It has scarred my soul. I hold onto that pain to an extent that surprises me. Maybe it’s because Trevor represents what could have been. I spent the first couple nights in the hospital after Noah was shaken wondering if I had lost my child forever. In some ways I did. I look at early infant pictures of him and know that the baby who came home from that 18-day hospital stay was not entirely the same boy I had dropped off at Trudy’s house on Monday, April 20th. But there is something about Trevor’s smile, something about that little boy that has taken ahold of me. I love him though I never knew him. I miss him though I never met him. I wonder if it’s me projecting emotions I’ve failed to adequately address with Noah. It is easier to grieve for another baby than my own? Or is it because I came so close to that loss that I possess the curse – or maybe a blessing – of a person rich with empathy?

I know Mike wonders sometimes about me, the way my emotions manifest themselves. I nearly had a nervous breakdown on Christmas day when I thought Noah had gotten a hold of a piece of salami (which would have destroyed his diet). There I was standing in my parent’s kitchen with dear friends and family as an audience to my display of frantic questions and a torrent of tears. Or today in a meeting. When I should have been working. And instead I cried. The darkness envelopes me when I least expect it – and always when I’ve taken the time to put on mascara!

I am still utterly susceptible to why us? moments. I subscribe to them often when I’ve had too little sleep, or Noah’s making the diet nearly impossible and I’m terrified a seizure will rear his ugly head, or when Noah’s limping for days on end because he has tightened heel cords as a result of his brain injury. Sometimes I stand in the corner of our kitchen, the gram scale at my side, and I think aloud: this is bullshit. But as my best friend of 22 years said to me last week, when I was stuck in a why us? moment: “We all have our crosses to bear.” She’s right. Isn’t it obvious? One moment I’m whining about how unfair our life is, the next I’m crying about how unfair life has been to baby Trevor and to his mom Kelly. Then I turn on the news. Sheesh. That’s enough to make me climb into the crawl space of our house where the stink bugs congregate.

We all have our crosses to bear.

For Gail Dobson it is 20 years behind bars. It is shamefully too little when she should have served 55. It is shockingly too little when you look at Trevor’s sweet smile and you melt, just before you cry. We’ll take what we can get, I guess, and then we’ll all move forward, one step in front of the other, using our heart to guide us. Because really, none of us was given a map.

Every day I think about writing a blog. And every day, instead, I: change five poopie diapers; chase Noah from one end of the house to the next, telling him not to bite the cat, knock down a lamp, or steal his brother’s pacifier; I spend at last two hours cooking keto meals for Noah and another 3 hours doing everything but standing on my head in an attempt to get Noah to eat those meals; I pick up toys – not just some toys but pretty much every toy my boys own; I clean clothes and toilets; I tote Noah to and from doctor’s or therapy appointments; and I reheat my coffee over and over again, that warm sip always eluding me! Every day I think about writing a blog I also count: 100,101…112!

It seems only yesterday that we began the keto diet at Johns Hopkins, and we’re still going uphill. But just last week Noah had his 3-month keto check-up. He also had his 2-year check-up with his pediatrician. His doctors are floored, and his pediatrician called him a miracle. What a birthday gift!

In the past several months that Noah has been seizure free, he has come into his own. This means the sweet, previously affectionate child I spend all my time cooking and feeding sometimes wakes up cranky and snarly. He sticks out his bottom lip when he doesn’t get what he wants. He cries when I say “No” or he smiles and does exactly what I told him not to do! Avry is cruising along furniture, already taking single independent steps – and at only 10 months! So the two of them gang up on me, their daddy, or their grandmothers (whoever is around to be their victim!). They run interference, Noah pulling open a drawer I thought I had baby-proofed while Avry crawls like lightning into the the kitchen because I left open the gate in an attempt to stop Noah from pulling items from the drawer onto his head! Noah has learned to crawl onto the couch, which is great. He has also learned to crawl onto a chair and then onto a table, which is not great! No more pretty flowers in vases. Our ball pit is the only sanity solution for bathroom trips and quick, shove-some-food-in-your-mouth-before-you-starve moments! Oh, thank goodness for our ceiling light because the lamps have since gone to a better place. A moment of silence, please…

If I were to summarize the last several weeks, I’d say I am E-X-H-A-U-S-T-E-D and in desperate need of a pedicure. But really, who am I to whine when Noah, in the last two weeks alone, has learned to drink from a straw, nod his head “yes”, turn the pages in a book without eating them, climb onto his horsie, throw and catch a ball AND be perfectly age-appropriate by driving me utterly nuts? Noah sure has become a terrible two. But he’s also a miracle. I’ll take that over a pedicure any day of the week.

It’s been more than a year and a half since I began Noah’s Road in the dim light of Noah’s hospital room in the Pediatric Intensive Care Unit. I still remember sitting on the burgundy vinyl pull-out chair, my legs tucked under me, thanking people near and far for a fountain of love, support, and prayers. Though Noah had nearly died, and despite heartache so deep I could barely breathe, I had no idea how different our life would become from everything I had always dreamed. I didn’t understand all that I do now about Shaken Baby Syndrome. In the last year and a half we’ve faced hundreds of moments as dark as those first nights in the hospital. I’ve blogged about many of them. You’ve read my words, felt my pain, and known that often as I type, I cry.

Tonight is different. Tonight I want you to feel my joy. Tonight I hope you will smile. You’ve guessed it; I must be transparent now: Noah is still seizure free. He’s been seizure free for 88 days. 88! Who knew there could be a number even better than ZERO? Every day Mike and I thank God for our miracle. I know that the seizures could come back. Every day is a gift, and we’re embracing each day as it comes. So far the Ketogenic diet has been our miracle diet. You will hear utterly no complaints from me. I would stand in the kitchen for hours on hours – and I do – so that Noah might never have another seizure.

Since Noah has been seizure free, he has come leaps and bounds. Every day he does something new. I’ve begun to keep a journal of Noah’s accomplishments. I do it because I don’t want to ever forget all these tiny, yet momentous steps in his life. And I do it so that on the sad days – they do still happen, though far less often – I can read something positive and be reminded of how far Noah has come. Even now, as Noah is tucked away in his bed, passed out with his head on his giant stuffed monkey, I can’t help but smile. He is surpassing all my expectations. I am in awe of him.

Let me give you a little perspective, a glimmer into our life with Noah these days. First of all, Noah has Global Developmental Delays. He’s behind in gross motor, fine motor, and speech. In his therapy sessions, for months and months, we’ve been working on putting items into containers, clapping, signing “more” and “all done,” and keeping his attention more focused. It’s tough when I see Avry begin to do these things effortlessly and only at 9 months old. Noah will be two in two weeks. He still has no words, while his friends are beginning to speak sentences of several words. Noah is beginning to run, but he has low tone in his trunk and he toe walks, which makes bigger gross motor gains difficult. We all work hard, even outside of this therapy sessions, to improve Noah’s skills. Until he went seizure free, the gains were slow, very slow.

Since his little brain has had a chance to relax, Noah has been thriving. He’s clapping and dancing. He’s giving “Five” to Mike and even does “High Five” and “Ten” now. You should see Mike’s face glow when Noah does this. It’s always a perfect bonding moment. Noah is climbing on everything and getting more confident every day. In fact, much to our newfound anxiety, Noah has climbed out of his crib three times this week! Noah is also perfecting his slide down the windy, tunnel slides – the faster and higher the better for our adrenaline junkie! Noah’s eye contact is improving almost daily. He used to rarely look into our eyes and I longed for it. But now he locks eyes from across the room and comes running to me. His feet are heavy on our wood floor. I love the sound. He and Avry are a sight to behold: two brothers, tall and lean, full of energy, giggles, and laughter. They crawl around the house together, play in their tunnel, hold hands while sitting in their carseats, and yes, they bite each other and pull hair. Mike and I feel so normal sometimes watching them play or fight.

We wake before the sun. I rarely get a chance to eat. It’s a slow day if I’ve changed less than five poopy diapers. And when I sit down at night, my heart continues to beat heavy for an hour before it calms down from the storm of our day. But the nights aren’t filled with tears now. I don’t have images of Noah’s head dropping more than a dozen times. I get to write down accomplishments instead of seizures. There are moments now that feel so utterly normal in their chaos. I hope to hold onto these moments forever, savor them, and sink my teeth into them.