This journey of ours started in March of 2015. My world came crashing down around me when the ultrasound technician’s smile and sense of wonder turned to confusion and concern. As a pediatric nurse, I know that look, and the feeling that can sweep over a room — something was wrong.
Within days, which felt like an eternity, I was lying in an MRI for over an hour, as my 24-week-old unborn baby was meticulously scanned. The pillow beneath my head was soaked from the tears that rolled down my face. I was thankful for the loud noises that drowned out my cries.
Fast forward to a conference room. I held Ben’s hand as a neurosurgeon handed out potential diagnoses, potential outcomes, and potential scenarios. I can clearly remember Ben demanding statistics, percentages, and severity on a scale of 1-10, but no concrete answers were given.
Hours later, I cried as I sat on the deck of our house. It was cold, but the sun felt warm on my face. I looked down at our freshly built deck, a generous wedding gift from my in-laws just months before. How had I gotten here, from a newlywed excited for her future, to a grieving woman questioning her baby’s future? Can I do this? Should I do this? Will he have any quality of life?
There were too many unknowns, but what I did know was that this baby boy was already a huge part of me, and I loved him more than anything. I cried myself to sleep most nights of my pregnancy. Fear, worry, and grief were all-consuming.
A lot has changed in four years since our sweet Sam made his arrival, but then again, a lot hasn’t. I still cry myself to sleep sometimes. I stay up late researching, falling down a rabbit hole of possibilities and prognoses. I lie awake at night worrying about Sam and his future.
My mind is constantly in a state of multitasking. There are appointments, tests, follow-ups from tests, medications, in-home care, along with the everyday errands and housework. While I juggle all the things on all the days, I simultaneously juggle emotions such as fear, worry, sadness, anger, hope, and joy. Any setback not only has me jumping out of my skin, but also telling myself to take a deep breath and “wait and see.”
What people don’t understand is what “okay” means for us. It means stable. It means that my husband and I manage Sam’s deficits and medical problems in order to prevent complications.
Sam has lipomyelomeningocele. It is a form of spina bifida. Not only did Sam’s neural tube fail to close properly, but additionally, a mass of fat (lipoma) grew within the base of the tube, attaching itself to the surrounding spinal canal, bones, and nerves. In the first two years of his life, he had already undergone two extremely invasive spinal cord surgeries with the goal to “untether” the fatty mass from the nerves involved; both were unsuccessful. While some of the mass was debulked, some nerves were released, and some scar tissue was removed, there remains lipoma that contains spinal nerves. These nerves carry important messages from one part of the body to another, and they are severely compromised. It is because of this that Sam has neurological deficits — lower extremity weakness with numbness, drop foot, along with bowel and bladder dysfunction.
Our support system of friends and family have been a huge part of our lives and we’re grateful to each and every one of you. You see Sam as healthy, happy, and mobile, because from afar, he looks okay. So when we’re asked for updates on Sam, the easy thing to do is keep it simple.
Question: “How’s Sam?”
Response: “He’s okay…”
What people don’t understand is what okay means for us. It means stable. It means that my husband and I manage Sam’s deficits and medical problems in order to prevent complications. While we want to be truthful, it doesn’t feel like appropriate dinner conversation at a restaurant to toss around all of these variables:
Question: “How’s Sam?”
Response: “Well, he takes his daily medications for us without any problem as long as we hide it in whipped cream. Urinary catheterizations are tolerated every four hours as long as we aren’t in a public place because he’s scared of changing tables. He hasn’t had any accidents at school since we started doing enemas twice a day. I drive over the mountain for physical therapy services, which, yes, is quite a drive, but I pack snacks and games for the ride there, and lunch for the way home!”
Lipomyelomengocele is a complex disorder. There is no cure for it. It is unlikely that his spinal cord and spinal nerves will ever be safely released from the fatty mass. His deficits will likely get worse. His bladder and bowel will not function on their own. Sam might not be okay, and we won’t know until we know.
I still cry myself to sleep sometimes. I stay up late researching, falling down a rabbit hole of possibilities and prognoses. I lie awake at night worrying about Sam and his future.
What I do know is that Sam has been a huge blessing in our lives. He gave me a purpose on this earth and I know without a doubt that I was supposed to be his mommy. There are so many what ifs, past, present, and future. What would our lives be without our miracle that is Sam? There would be no kitchen dance parties, no two and three rounds of “Twinkle Twinkle Little Star” at bedtime, no bathtime conversations about life and “would you rather.” There would be far less laughing and joy in this world.
So we’ll keep on keeping on. We’ll do the drives to Baltimore, Columbia, Hagerstown. We’ll organize our days around procedures and appointments. We’ll keep track of all the medical expenses year-round in the hopes it’ll help us with tax deductions. We’ll keep researching and refreshing clinical trial lists. We’ll advocate for the very best care, equal opportunities, and accessibility. We’ll slow dance in the kitchen. We’ll eat the donut. We’ll laugh with each other, support one another, fight for each other, and love endlessly. Sam is okay, and even if he isn’t okay… we’ll be okay.
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