Noah’s Road

The following blogs are from my original blog, Noah’s Road. Here you’ll get an idea of the early days on this new journey. Sadly, we let the old blog go in an effort to move forward from the past. Somehow we thought we could leave it behind, not realizing then, that it was the beginning of our testimony, and some of the most powerful material of our lives. We’re thankful some of those early experiences have been saved, and I invite you to read them from the beginning below.

You can hear my testimony, which was featured on Christian Devotions Speak UP, by selecting this title: Shaking Revealed An Unshakable Faith.

Noah’s Story

Originally Published in April 2009

With Noah’s first breath on November 29th, 2008 my husband and I feel our lives truly began, and when he looked up at us with those stunning blue eyes, our hearts filled with unimaginable bliss. Each day of Noah’s first five months were filled with joy and awe; he had reached so many milestones: turning over, sitting and standing with support, laughing and cooing to us, and eating solid foods (butternut squash and avocado the clear favorites so far).

But on Monday, April 20th, our little Noah’s life changed dramatically. He was shaken by his daycare provider and within minutes began to seize, and he continued to seize for 15 minutes until he arrived at the INOVA Fairfax emergency room where a huge team of doctors worked diligently to save him. Those first hours were so dark, as Noah was in such critical condition that we weren’t sure he would survive. With God’s grace, he pulled through those early hours and was admitted to the Pediatric Intensive Care Unit, where he has been ever since.

His early road to recovery seemed so positive—we even got to hold him once and feed him a bottle—but on Wednesday the 22nd his seizures returned and continued to worsen and after two days, he was placed into a medically-induced coma in order to let his brain rest and hopefully begin to heal.

The road ahead remains uncertain. Once he awakes from his coma, the seizures could continue, and only an MRI will tell us how much brain damage he has. Also, the force from the shaking caused serious bleeding behind his retinas, which only after a long period of time, will we know how his sight will be affected. It will be a long road.

Despite the tragedy of little Noah’s story, Noah’s Road has been created with hope. We want everyone to know our little guy; we want everyone to love him and share their positive thoughts and prayers on his behalf. We hope that if you are visiting Noah’s Road that you will share it with your friends and that you will ask your friends to share it with theirs. Only this way can the healing power of love and prayer help our son—our heart and our breath—to heal.

We understand that reading Noah’s story brings to light so many questions and anger about how someone could do this to a loving, helpless child. We are angry. We are devastated. However, Noah’s Road is dedicated to hope and prayer, not in any way a medium to condemn the woman who did this to him. Please keep your comments positive.

Laying Pavement with Thanks

 Originally Published on April 29, 2009

Nine days ago, I thought I would lose my son. I watched as he lay stretched out pale and naked on a hospital bed with a team of at least six doctors working fervently to save his little life. My husband Mike stood next to me. We held each other and cried, our world quickly shattered. But in the last several days we have been so fortunate to not only feel God’s hand on us, but we have been overwhelmed by the outstretched arms of friends and family trying with all their might to share some of our pain and to help us along this new journey.

They have brought us more food that we could eat in a year. They have taken shifts staying up all night watching the EEG monitor for seizures. They had held us as we cried, teetering on the brink of anger, grief, and utter helplessness. They have watched as my five-month-old son sleeps in his silver hospital crib, tubes coming out of his mouth, his hands, his feet, and wires connected form his head to the EEG machine – and they have shared their tears with my husband and with me. For all this I am thankful. More importantly, I am thankful that, unlike many other babies who have been shaken, my baby is alive and continues to improve.

It is for all the above reasons and so many more, that I feel this blog needs to begin with a resounding THANK YOU! Thank you to Eric and Claire Dickson and their wonderful friend for making this website possible. If you have learned of our story through family or friends or through Facebook and you have been spreading his story and asking for prayers, thank you. If you are visiting Noah’s Road after being told of Noah’s story, thank you, and please send it along so that others can learn about our amazing little boy. And if you would please visit the links on this site to learn about Shaken Baby Syndrome and being to tell others you know what you have learned—babysitters, caregivers, other moms—then thank you, and thank you again.

Mike and I invite you to join us on this journey of hardship, hope and recovery. We hope you will find inspiration in our son’s strength as we all together along Noah’s road.

Here are resources to educate you on Shaken Baby Syndrome, also referred to as Abusive Head Trauma.

 

A Change in Direction

Originally Published on April 30, 2009

First of all, we are beyond touched and continue to be inspired by how many people have come to the website, and we can only hope that each person who has learned his story is now praying, meditating, or even just sending gloving vibes his way. Because we’ve had such an awesome response from all around the world, we ask that if you comment on our site that you tell us how you heard about Noah’s story.

It is so unfortunate that in the midst of this outpouring of support and as we travel on this trying journey towards Noah’s revery, that Mike and I should even need to think about the possible ramifications of our words on this site, and how those words could possibly be used against us as we fight for justice for our son. For this reason we need to take a slight change in direction in how we approach Noah’s Road. We will not be able to provide updates on Noah’s medical recovery.

I have grappled with this over the last day, and I have tried to imagine ways in which I can continue to share with all of you our amazing son’s strength and will. Please bear with me as I work daily (or as often as I can) to provide you with something to hold onto—something to inspire you to keep going back to Noah’s Road.

Because I have such faith in the power of communal thought and prayer, and because I believe in Noah’s Road, I will tell you this: I am petrified Noah will lose his eyesight. So, I’d like to end today’s blog with a plea that you focus your energy on Noah’s vision, so that he may be able to see everything from his soft, fuzzy stuffed lion to a pink sunset on his wedding night.

Traveling Home

 Originally Published on May 2, 2009

For those of you who read my husband’s heartbreaking blog last night, you know that we are again digging ourselves out of the darkness. We had so hoped that the MRI would come back clear, that the damage from my poor baby being shaken would have been minimal. Though the prognosis was not entirely a shock, no matter how prepared you think you may be, the weight of bad news can still crush you. It can altogether cripple you.

Thankfully, we have such a wonderful support system in our family, and they ordered us back to the little cape cod that Mike personally (with his own hands, my friends) renovated from an ugly red house into an adorable stone cottage: our home; but, we have learned that ‘home’ is such a relative term. It’s not a house, whether or not you’ve put your own sweat into its very foundation. It’s not a comfy couch you sit on and watch TV or a bed you sleep and dream upon, or a kitchen where you cook every night. Since Noah opened those big, blue eyes more than five months ago, he has been our home. And so, after taking turns beating at the punching bag in our carport until my hands hurt and Mike’s bled, and after smelling the sweet lilacs in our backyard (Mike’s idea – who knew?), and after a good night’s sleep, we were anxious to get home — to Noah.

And in the light of day, after many prayers and tears, our little world seems less dark. As I write I am listening to the gentle snores of my sleeping baby. Noah – as we should begin to expect from him, our little courageous lion – has fought another night and has improved.

It is no doubt because God has heard everyone’s prayers, the prayers that are literally encircling the world.

In the short time Noah’s Road has been live there have been more than 23,000 visitors from over sixty-eight countries. Humbly, snuggled into the pullout chair that I now use as my sofa, I’m signing off with a thank you for helping to keep my husband and me so close to home.

Mothers’ Day

  Originally Published on May 10, 2009

I am a different person than I was six months ago, and it has nothing to do with turning 30 in January; it began when I became a mom. When Noah was first brought home from the hospital, that very first night after we’d laid him down, I bawled and bawled. It could have been the hormones; it could have been the lack of sleep; but I think it was because I had never known a love so astonishing that it felt as though I needed it to breathe, and it petrified me. I had waited so long for Noah to come, and Mike and I had wanted him terribly, and now that I had him home, all I could do was cry for the helplessness I felt.

Nearly six months later, I find myself again at a point of feeling helpless. I was overjoyed when we left the hospital. I think Mike could testify that I skipped. But reality settled in quickly at home: the Noah I have now is not the Noah I’ve known for all these months. His cries are different, and I have to learn what they mean. I find myself putting a bottle in his mouth all the time, hoping that it will soothe him — something I had done in the early days when I didn’t know how to differentiate between cries, when I didn’t know what else to do. He is on so many drugs that when we prepare his medications our coffee table looks like a meth lab. Our Noah used to smile and laugh all day long. All our friends remarked about how happy he was. Even my daycare provider commented about how lucky I was to have such a happy baby.

I sleep in Noah’s room now, terrified of what might happen in the night — no monitor can curb that terror — and sleep in there is hard to come by. Noah wakes when his pacifier drops our and cries, so I put it back in — several times a night. I fear that I won’t get up at 3 AM to give him some medication so my internal clock wakes me up on the hour. I have anxiety dreams.

I am beyond grateful that I am still a mom and that my strong, amazing little boy has come home. I love him more now than I ever have, if it’s even possible, but my heart breaks every day. I miss the little boy I’ve grown to know. I miss knowing how to be his mother, knowing how to calm him and to make him laugh. I miss his smiles. And then I become angry. Someone took all of that away from me, someone I trusted, someone who had once told me what a happy baby I have – how lucky I am.

There were two other cases of babies with SBS at INOVA Fairfax hospital while we were there; I am lucky. My baby has come home. But I don’t know what the future will bring. Mike and I both try to forget the amount of brain damage he has (because we can’t see it), but we can’t ignore the fact that our baby doesn’t look at us, that we can’t make goofy faces at him and watch him laugh at how silly his parents are. I rally for our little boy when he’s awake — I smile, tickle him, kiss him, love him — but when he sleeps it’s like a dark haze envelopes me. I am so scared.

It is a wonderful gift to have my son home for Mother’s Day. We are blessed in many ways. But I’m asking all of you not to think this means my son doesn’t still need your warm wishes, love, and prayers. He needs them all the more.

Happy Mother’s Day — I know that because of Noah, thousands of moms will be holding their little angels even closer to their hearts today. My friend Karen might have said it best: Noah has inspired more faith in the last two weeks than most can inspire in their entire life.

A Familiar Journey

Originally Published on May 15, 2009

Loyal Noah fans, what a busy week we have had, and it actually shocked me that it’s been so long since I’ve written. Life with Noah truly reminds me of what it was like when I first brought him home as a newborn. Though he was sleeping through the night about five weeks before he was rushed to the emergency room with severe seizures, he now wakes up at least once a night for a feeding. So I crawl out of the twin bed that we have in his room now, using only the little sliver of moonlight that creeps into the room as a nightlight, and I make him a bottle, feed him, and try to rock him back to sleep in my lap. Somehow this seems to take an hour, and of course I can’t fall back asleep until I know he’s off in dreamland again; I’ll lie there and listen to his breathing unit I can tell he’s asleep.

Noah must be able to sense when the early hours of morning are approaching, despite our room darkening blinds (and he always seems to know when I’ve only been back to sleep for a couple of hours), because he wakes up demanding to be fed — and let me tell you that his voice has finally returned. So again, I stumble out of bed and feed him, my eyes barely open. During the days, perhaps because of the various drugs he’s still on, he sleeps often. I try to sneak in a nap, but they never quite quench that unending sleepiness.

Just like after Noah was born, when my only outings were either to Target (for more nursing supplies or diapers) or for an appointment at his pediatrician or a lactation consultant, the only outings of the week so far have been doctors’ appointments — and, boy, have there been many. He’s been to the neurologist. He cried and quivered for forty-five minutes as a lab technician attempted to draw blood from him at a Lap Corp. He’s had two physical therapy sessions and one occupational therapy session. He’s been to his pediatrician. I’ve yet to go to Target, but since one of the grandmas will be watching him today, I’m thinking Target sounds like a lovely excursion. It makes me feel good to buy things for him – an outfit for the summer, a larger size of diapers: it’s a reminder of how fortunate I am that I can plan for Noah’s future, that though it was so close in those early days in the hospital, I didn’t lose him. So many other babies diagnosed with Shaken Baby Syndrome are not as fortunate, so many parents left with nothing but memories.

Though we have been through so much pain, and my little fighter continues to box his way through each day, I’ve had such beautiful, tender moments with Noah this week. When he first came home a week ago, he didn’t know me, didn’t respond me. It broke my heart. And as you read in my mother’s day post, I was in a dark place because of it. But then it occurred to me: when Noah was a newborn, though we had shared a body for nine months and he fed from me, we still had to grow to know each other. We would snuggle together skin-to-skin, we danced, and I sung to him (the only person on the planet, by the way, who appreciates my singing). So this week Noah and I cuddled and napped together, his tiny body curled into mine. We danced over and over again to a Garth Brooks song called “To Make You Feel My Love.” And out of the shadows of this terrible ordeal that our family has been through, Noah and I have found our bond again. And it is stronger than it ever was before — because I got a glimpse of life without him.

 

In Search of Sight

Originally Published on June 1, 2009

Last week I wrote about the nerve-racking appointment with a retina specialist in which a particular eye surgery was explained in detail to us for the first time. We are terrified, and the weight of that decision kept us awake at night and distracted us during the day. But not only were we scared about the idea of surgery, we just didn’t feel the doctors we had seen were a right fit for us. Every parent knows that feeling; it comes from the gut. Fortunately for us, my friend used to work at Children’s National Medical Center (CNMC). She contacted the Chief of Ophthalmology and told him of Noah’s story. Though he was out of the office and would be for several more weeks, he took the time to talk to me about our situation. He showed us not only great kindness and understanding of our desperation, but he offered advice and expertise that was the first step of our journey to Baltimore.

We went to CNMC on Friday afternoon. The staff was exceedingly thoughtful and treated us the way we felt we deserved to be treated: as a family in need of compassion. More importantly, however, the ophthalmologist we saw recognized a complex situation that needed to be tended to sooner than later. He made a call to a doctor at John’s Hopkins who specializes in high-risk eye surgeries.

First of all, let me say that the specialist we saw today at Johns Hopkins was not only top-notch, but he put our minds at ease and made our decision so much easier. We are filled with confidence in him on both a professional and personal level. And so, after examination after examination, and waiting room after waiting room, we made the decision to bring Noah back for surgery on both his eyes as soon as possible — tomorrow morning. After eight hours in the hospital today, we sat in traffic to get home, packed some bags, (uh oh — did we feed the cats?), and were on our way back to Baltimore, where I now sit on the couch in a hotel room suite. Noah is sleeping in the center of the king-sized bed, his arms stretched out above him. It will be so special to sleep with him beside us tonight.

We don’t know what tomorrow’s going bring. We have weighed the risks against the benefits. We made our decision, the first of many decisions for our son, and the first of many outcomes that we simply have to leave up to God.

Mike and I both know that God has worked miracles in Noah so far. We know this on the simplest level. We know this because Noah is still alive. On the way here tonight Mike asked me if I’d prayed today. I admitted that I had only said one or two cryptic prayers throughout the course of our hectic day. “Sometimes,” he said, “My prayers are only one word. Sometimes it’s all I can manage.” I nodded.

I turned to look out the window just then, and on the side of a brick building was a giant black sign with bright white letters. It was only one word: Believe.

 

National Center on Shaken Baby Syndrome

Mayo Clinic Shaken Baby Syndrome

Center for Disease Control: Preventing Shaken Baby Syndrome