Today’s feature on The Thersday Series is so very tender. The truth is, Sarah and Savannah’s story could be any of our stories. That’s how random illness is—we can do everything right as moms, we can be vigilant and cautious, and yet we cannot possibly prevent what we cannot see. Nevertheless. This is a story is about blinding fear and stubborn hope and inexplicable growth, and I think we can all identify in some way with Sarah’s words and Savannah’s incredible journey. After all, their last name is Miracle, so there’s that. Welcome to the blog, Sarah. Thank you for sharing your story with us.
Tell us a bit about Savannah.
I often refer to Savannah as “the crowning jewel” of our family. We’d always wanted a daughter and felt that if we were given a little girl, the Miracle family would be complete. When I was pregnant and discovered she was our girl, I cried for joy! I didn’t even know her yet and I already knew she was the perfect little girl for us.
For the first year of her life, we all lived in this state of bliss – the kind you don’t recognize in the moment because life feels so good and you’re just going with it. And then I reached the moment I had been waiting for as a new girl mom: her brothers were about to go back to school and I was going to get all this precious one-on-one time with just her.
It was only the first week of school when she got sick for the first time ever. High fever, vomiting, and apparent achiness, but this wasn’t my first time with a sick child. So I waited it out. But after only two days, she didn’t wake up.
We took her to the ER. They gave her fluids, believing that she would “perk up.” They ran all their tests, trying to find out why my 14-month-old was so very sick. Finally, after a few hours of not perking up, her right eye went sideways. That’s when I knew it was serious. That’s when I lost it. I started yelling at them to “fix it” while they began a lumbar puncture and called for an ambulance to take us to UVA Children’s Hospital.
A couple hours after our arrival, a doctor would pull us into a corner and gently break the news to us that the lumbar puncture tested positive for bacterial meningitis. I remember two young nurses looking on in pity, like he’d just told me Savannah was going to die. By 4:00 p.m. that day, she was intubated in the PICU for fear she’d stop breathing on her own. My husband, Joe, and I were just beside ourselves in shock and disbelief. We didn’t see this coming at all. She was a fully vaccinated child, we fed her organic, we did everything right—there was no reason for her to have caught this deadly infection.
We’d spend the next 18 days beside her bed, waiting for signs that she was still in there somewhere. In that short time, she lost her ability to walk, she lost some of her vision in her right eye, and two months later, we would find out she’d gone completely deaf from the infection. And we were told we had caught it early.
I was still hobbling emotionally from her time in the hospital, and mainly concerned about her eye recovering when I found out she was deaf. It was a bitter blow. I knew hearing loss was a possible side effect, but I didn’t believe it would happen to her. We barely had time to absorb this new reality when we were told about cochlear implant technology. Because of the severity of her infection, the window for her to receive cochlear implants was closing fast; if we waited too long, her cochlea would become bone because of scar tissue and she’d never have the opportunity to hear again. It was a difficult choice to make, especially with the compressed timeframe. We wanted Savannah to hear again, but with cochlear implants, she would not hear the same way we do. They don’t work like hearing aids, which amplify acoustic sound. They work by stimulating the auditory nerve with an electric pulse that carries sound to her brain – and her brain “hears” what’s coming through her processors. It’s all very robotic and heartbreaking. But the only other choice was a lifetime of complete silence.
So, one month after we discovered her hearing loss and right before Christmas, she was in surgery, receiving bilateral cochlear implants. She would be activated one month later, and then begin her auditory verbal therapy a month after that. Through this therapy she would learn to use her implants to develop speech and, hopefully, regain all the skills she’d lost during her illness with the ultimate goal of participating fully in the world the same way a hearing child does. Considering what could have happened, we’re very happy with how she healed from her health event and with her language development so far.
We recently had our two-year “unhappy anniversary” and in some ways, I am still in emotional recovery from the whole thing. I’m still learning what our lives are like now as Savannah still has significant hurdles to overcome. It took a long time for me to see that she was still the same little girl I knew would complete our family. She is still perfect – she’s still the crowning jewel of our family.
People who have experienced tragedy often describe life in terms of before and after. How has your day-to-day life changed since Savannah’s illness?
Tragedy most certainly has that effect. There was a time when I hoped this would all be in the rearview mirror and we’d look back and talk about “that one time Savannah was really sick” and how scared we were. But deafness doesn’t go away. I can’t forget that this illness happened because everyday, I have to put batteries on her processors so she can “hear” and interact with the world she was born into.
Imagine going swimming, camping, getting caught in the rain, visiting a pumpkin patch, losing power for several days—all of life is now experienced through the prism of her hearing loss. I spend a great deal of time taking care of her processors, including trying to find them because they fall off all the time! They’re like having two extra children, they’re that important to our functionality as a family. Never in a million years did I expect this would be my day-to-day.
The first night we were in the hospital, I thought about how when I woke up that morning, my life was normal. I had a cup of coffee, I put the boys on the bus, I went upstairs to wake Savannah. Normal was so close; I was living it earlier that day. In that moment, only hours removed from normal, I had no way of understanding of what life would look like anymore. Life as I knew it was over, but I didn’t know exactly how yet.
This event was a hard reset for me. I had to learn to slow down. To take things day-by-day—even moment-by-moment. It was painful because the world that I used to be a part of was rushing on, and for some reason, I wanted to keep rushing on, too. But I couldn’t. I had to let everything go. I had to learn my new normal. I had to learn to forgive myself for not having the same life as I used to. It’s not my fault; I haven’t done anything wrong, but I can be pretty hard on myself when I’m unable to keep pace with the old me.
The good news is that things are normalizing. We’re getting closer to the place we left behind that morning more than two years ago. It’s taken awhile, but we are beginning to see glimpses of the steady, blissful life once again.
There is a theory gaining traction in the medical and mental health communities called Post-Traumatic Growth. What does that term mean to you?
Tragedy lends itself to growth because a loss puts all things in perspective. When you go through something traumatic, you start receiving answers to questions that have nothing to do with your tragedy. Questions like: Who are my real friends? Will my goals/dreams survive this storm? Should I even care about those things anymore? What am I supposed to be doing with my life now? What actually matters?
More importantly, your time is consumed dealing with the event and its aftermath, so all the peripheral matters stop getting your attention, which allows things to die. When things die, you’re then presented with new choices: Should I let these things stay dead? Should I try to bring these things back to life? Should I start something new entirely? In a strangely generous way, a tragedy affords you the opportunity to reimagine your life and where you’ll direct your energies once you’ve cleared the storm.
In my experience, tragedy is a pruning – limbs get cut off, or taken down to the stump, and things don’t look good for a while. But when the season changes, and things begin sprouting anew, where there used to be one limb, now there are four. And it’s fuller— life is fuller—and without trying, you now have the capacity to handle more.
That fullness is unlimited. It could be related to anything because you’ve experienced real fear, a real shaking all the way down to your bones – and survived. It’s empowering.
One of the things therapists encourage during these transitional times is writing about your loss and your victories. This resonated with me because prior to Savannah’s illness, I had been working on a personal writing project for many years. But very quickly I discovered my emotional energy was moving in a new direction—into all that was happening with Savannah and, by extension, myself. Naturally, I had to follow that direction. I put down my other writing project and started writing a blog about our lives in the wake of Savannah’s illness. It’s been so healing for me because I’m able to continue accessing that part of myself that is uniquely me and I get to do it in a way that benefits Savannah’s journey, and allows others to feel some of what we’ve been through.
In your blog, Roots and Limb, you say, “Savannah and all that happened to her has changed my life. It has changed who I am. The way I see the world, the way I listen to God.” What specifically do you do to cultivate gratitude for your new normal?
Honestly, most of the things I care about now, the things I’m involved in, and the thoughts I think look nothing like the life I was living before Savannah got sick. For one, I’ve had to confront my own beliefs about what it means to be successful and what it means to be strong. Because what that looks like for Savannah is vastly different from the standards I once held for myself. People have told me I’m “strong,” but I see it differently. I’ve given up on the idea that I’m in control of the direction of my life.
I’m a lot quieter now as I’m learning what it means to listen – not just hear, but truly listen with the intent to develop something beautiful, to change something about your brain. You can’t go to therapy week after week and not be impacted by how listening is broken down into little pieces that a child can use to build language. If you’re really listening, it changes you.
I’ve become incredibly sensitive toward societal prejudice against deaf people and others who are marginalized. People are mocked for not being able to hear and that is truly heartbreaking as the mother of a child who was born hearing and lost it from illness. But I can’t go defend Savannah’s condition to every person who has their own prejudice to deal with. Instead, I’ve found other ways to serve and express gratitude to the community of medical professionals that have been so integral to our daughter’s recovery.
Charlottesville is SO fortunate UVA Children’s Hospital is here. Our family is now a Children’s Miracle Network family – you’ve probably seen the opportunity to give to CMN at Walmart—they ask me every time I’m at checkout if I want to donate! And UVA is in that network. I also take every chance I get to speak to future audiologists and speech therapists at the university about our journey. And if I have the chance to share our story on behalf of the Children’s Hospital development team, or serve on a committee that helps raise funds for the Children’s Hospital, those are the things I will make time to do.
Who keeps you company on your journey?
My pastor says the people who love your children are closest to your heart, and that is the truth. The people who keep me company on this journey are the ones who rush in with their love for Savannah. I have one friend who, when I brought Savannah home from the hospital, took her disabled little body into her arms and cradled her for a long time. I have another friend who, when we found out Savannah was deaf, held her face-to-face and told her how loved and precious she was. And yet another who, knowing this was just the beginning of Savannah’s story, came to capture her time in the hospital through photos as a gift, so one day we’d be able to say, “Look how far she’s come.”
But right now, I don’t get to spend as much time as I’d like with the friends who “fill me up” and remind me of who I used to be. I spend a lot of my time interacting with the people who are a part of helping Savannah get back all that she lost: her nanny, her therapists, her teachers, her doctors. And that’s all right with me. Because when you think about what will matter five years from now, I know that everything we’re ALL doing to get Savannah back on track tops that list. And right now, when it matters the most in her development and recovery, that’s the kind of company I’m good with keeping.