Sandra Hall

@sandra-hall | contributor
Sandra is the mother of five children, ranging from three to twenty-three years in age. She lives in Durham, North Carolina, where she practiced law until late 2013. At that time her three-month-old Heidi was terminally diagnosed with spinal muscular atrophy type 1. Since then she has been tending to Heidi’s physical and medical needs and writing. She recently published a book about the grief of diagnosis and spiritual renewal that followed, “Juncture at the Still Point.” It is currently available on Amazon and available to read for free for Amazon Prime members.
Sandra Hall

Leaving a Medically Fragile Child to Work Outside the Home

The baby I was told I would no longer have by this time turned 3 the last Sunday of June. It was a sunny miracle of a day, this day we didn’t believe we would be blessed to enjoy. Heidi was diagnosed with spinal muscular atrophy type 1 when she was 3 months old. We were told she would be unable to breathe on her own within about a year. Her life expectancy was up to 2 years old. But Heidi has been able to benefit from a clinical trial drug. She breathes without ventilation and has more movement and strength than any of us would have believed possible. On her birthday, Heidi went to the mall, saw Finding Dory, shopped for toys and enjoyed her therapy pool. When Heidi was diagnosed in October of 2013, I abandoned practicing law, in part to care for Heidi’s medical needs and in part because I wasn’t mentally competent to practice. I’ve spent the last nearly three years at home with Heidi, caring for her, arranging her appointments, and writing a book about our family’s experience with her. I finished my book Juncture at the Still Point in the spring and I’m sure that writing helped me keep my sanity during the couple of years after Heidi’s diagnosis. Instead of the predicted deterioration and death, however, Heidi has exhibited slow but remarkable improvement. Recently my husband was laid off from his job and I ventured back into the work world. Not the high pressure, fractious world of litigation, as I had been a part of before, just low-paying litigation support projects. It’s low-stress, but also low-paying. It won’t pay all the bills, but if I have to suddenly leave work for an emergency, I don’t have clients who could go to jail or lose custody of a child as a result. Leaving Heidi at home, even with a nurse and her father, is harder than I could have imagined, and for different reasons than I would have thought. Heidi’s medical condition is precarious and subject to sudden emergency, but Heidi’s nurse knows her needs well and her father certainly does. What makes leaving Heidi to work outside the home so hard is simply missing her and missing out on everything that goes into her care. I’m not able to make the calls and emails necessary for lining up her medical and nursing care and therapies. I’m not around to get updates from her therapists. It’s only been a few weeks since I began working on these projects. I don’t take Heidi to her doctor’s appointments or speech therapy. I wasn’t able to go to her Individual Education Plan meeting. Every morning I walk out the door feels like a day of something lost. Though I gave up my previous career in law due to Heidi’s condition, I don’t miss that career. Instead, I now miss every moment that I might spend with Heidi, knowing her life can be unexpectedly taken at any time by a common cold that goes to pneumonia. As Heidi’s condition more often presents as physical disability than imminent death, however, my goal is to work toward as secure and consistent a life as possible. Our family must evolve as our  “new normal” with Heidi continues to shift in directions we can’t predict. If financial hardship sometimes brings knowledge of what is important to people, the disability or chronic illness of a loved one does so much more essentially. Most of us have some sense as we walk out the door to go to work that we are doing so for our families. We want our children to have stable lives that include food, shelter, medical care and a bit of recreation. Sometimes, though, parents get lost in the demands of work and alienated from the reasons for our efforts. Heidi changed this for me. A child with a life-threatening condition keeps a mother ever-conscious of what’s important. Heidi keeps me aware of what my efforts and commitments should be for: happy and engaged time with our loved ones, an awareness I deeply wish I’d had with my older, healthy children. On Monday, before I leave the house to go to my project job, I take a couple of minutes to recall Heidi’s birthday. I summon Heidi’s smile as she watched Dory dart around the big-screen aquarium of neon fish in search of her parents. I recall the wonder in Heidi’s eyes as she worked to propel her little wheelchair around the outdoor space at the mall, a wide-open space new to her. She had later struggled to move her wheelchair with one hand and hold onto her new toy drum set with the other. These are the moments we live and work for. As I miss Heidi today while I’m at work, I’ll remember yesterday and look forward to what the weekend will bring. The Mighty is asking the following: Describe a moment at work that was either incredibly challenging or where you faced adversity. Tell us how you handled it or wish you had handled it. If you are unable to work, tell us one thing you wish others understood about your situation. Check out our Submit a Story page for more about our submission guidelines.

Sandra Hall

A Letter to Myself: Receiving a Spinal Muscular Atrophy Diagnosis

Dear Sandra, The world as you’ve known it just vanished from under your feet. No, you have never heard of this disease, spinal muscular atrophy (SMA), would never have imagined so terrible a prognosis could be applied to any infant, far less your own baby. Your baby, that recently came from your own body, the baby you adore with all the fierce attachment of a nursing mother. First she will lose all ability to move, then to swallow, then to breathe. She has about a year. Take her home and love her to her death. As you drive home from the hospital after the shocking diagnosis, it will occur to you that you would rather be dead than watch Heidi slowly deteriorate, suffer and die. The beautiful autumn foliage will appear to you as the blaze of destruction from which there is no escape. You will curse a God you’re not sure you believe in and, in the next hour, beg and barter with that same God to spare Heidi. You will cry for months and every fiber of your body will ache. You will be unable to venture into public for many months because you no longer belong to that world of people happily walking around in stores and parks. For reasons you don’t understand, you have been banished from that world. You will desperately try an array of anti-depressants before discovering the obvious: there is no pill for this. You will seek relief in anything and everything — literature, prayer, wine, yoga, even the strength of anger at times. What you don’t yet know is that nothing will turn out as you’ve been told to expect. Over the next months, you will be unable to work as an attorney. But you will come to understand the toll that working in the courts had taken on you. You will learn and come to admit to yourself that practicing law had been strangling some essential part of you, your soul maybe. Instead you will learn to use a variety of medical equipment, and navigate medical, social service and insurance bureaucracies. You will gradually drain your financial savings and narrowly escape foreclosure proceedings, yet somehow be happier. Your husband will find a clinical trial that Heidi qualifies for. Heidi’s deterioration will slowly morph into small improvements, each building on the last. Though significantly disabled, Heidi will breathe without the aid of a ventilator unless sick. Heidi will move, sit with support, play, love and laugh. What a sharp and sly little delight of a person you’re going to know! Heidi will bring joy of a kind you’ve not yet known and are not able to envision today. The future holds days brimming with a sweetness of a kind you’ve not yet experienced. You will learn to live and love in ways you are utterly incapable of contemplating today. In future autumns, the fall foliage that appears as torches of destruction in this autumn of Heidi’s diagnosis will look quite different. Leaves in autumns to come will appear as pure, sun-fired beauty, sometimes tremulously rifled by breezes into an irradiated kaleidoscope of reds and golds that transform the entire world into one of mind-shattering splendor. You will encounter an ecstasy in at least some part of every day that Heidi’s eyes are ignited with life, every day that her eyes reflect the light of that same sun that flares the fall trees. The immediate aftershocks of the diagnosis can settle into a paralysis of depression and hopelessness. The hopelessness seems an impenetrable prison cell in which you and your child are serving a life sentence. But know that this is an illusion. The impermeable darkness that you see on all sides is not comprised of solid walls, but of a dense fog instead. It is a fog that will be burnt away and dispelled by the light and heat of a source you can’t yet conceive of. It is the light and heat of love, when love regains the strength to conquer fear and grief. Even if Heidi’s progression follows the prognosis given, things are not going to be what you may be told or what you may imagine. Much of what the doctors tell you will not come to pass, or will be experienced quite differently than they tell you it will be. The pity of some friends, relatives and neighbors will prove unfounded. You are about to learn something these people may never know: how little any us can predict or control our lives and futures. And how wonderful that can be when we let it be. You have something that others will never fully comprehend, it not being their experience. You have your child and whatever time you may have with her. She and the experience of having her are yours and her father’s only. Nothing — not disability or death, will ever, ever take this treasure from you. Even if she goes, she will still be yours forever. The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. Check out our Submit a Story page for more about our submission guidelines.