A Letter to Myself After My Daughter's Terminal 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.

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