Nearly two years ago, I found myself sitting in a neurologist’s office, hearing the devastating news that my two-year-old son, Ethan, had Vanishing White Matter Disease, an incurable and terminal brain condition. If I could revisit that moment, here’s what I would say to myself…
The next few days will be the darkest of your life. You will struggle to understand how to carry on, how happiness can return, and how to live a “normal” life once more. Your life will be forever segmented into the time before the diagnosis and the time that follows.
In the coming year, you will experience profound pain. It will be an ache like nothing you’ve ever known, sometimes so intense it feels physical. You may choose to hide this pain, as most people won’t know how to respond. They will offer comfort, but they cannot truly grasp what it feels like to know your child’s life is slipping away—and you sincerely wish they never have to.
Anger will consume you at times. You might see a child misbehaving and think, “Why does that child get to live while mine has to suffer?” You’ll recognize that this thought is unfair, but it will surface anyway.
Fear will also be a constant companion. You’ll worry about the impact this will have on your family and what life will be like after your child’s passing. Knowing what lies ahead doesn’t ease the burden; it only intensifies it.
You will feel overwhelmed and fatigued. However, gradually, things will begin to shift. The anger will subside, and the fear won’t haunt your nights as it once did. You’ll realize that the worst has already happened, leaving little room for fear. The pain will still appear, but it won’t be as frequent or as sharp.
You’ll start to accept your child’s fate, even as you passionately seek the best care and treatment options to prevent others from facing this horror. You will never be the same person you once were, but you will evolve into a better version of yourself. Initially, you may long for the past, but over time, you’ll find gratitude for your growth.
Life will reveal itself with newfound clarity. You will stop squandering energy on trivial matters, gaining clear priorities. Kindness, compassion, and tolerance will become your guiding principles, as well as those of your children, who will make you proud in the process.
You’ll discover strength beyond what you thought possible. Others will frequently ask, “How do you manage?” Initially, you’ll persevere out of necessity. Simply moving forward each day will fortify you. Occasionally, you’ll feel a flicker of hope that you can navigate this journey, and the blessings your child brings will begin to outweigh the heartache.
You will learn to cherish every moment. Happiness will return, perhaps even more profound than before, as you comprehend the urgency of each day. Friends, family, and even strangers will rally around you, and every act of kindness will feel deeply personal, filling you with immense gratitude.
You’ll stop saying “someday” and start embracing “today.” Humor will become a coping mechanism; you might even joke about your child’s illness, making some uncomfortable at first, but they will adapt to your newfound perspective. You will understand the healing power of laughter.
You will also come to realize that the worst is yet to arrive. The pain you felt upon the diagnosis is just a preview of the anguish that will accompany your child’s absence. In your sorrow, you will strive to remember that it was all worth it; your child was worth every moment.
The joy and meaning your child brought into your lives will ultimately overshadow the suffering. You will find comfort in knowing you are not alone. Overwhelm may still creep in, and doubts about your resilience may surface, but you will carry the knowledge that you have faced darkness before, and you can do so again. You will never, ever give up.
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Summary
This narrative reflects the harrowing journey of a mother coping with her child’s terminal brain illness. It details the emotional turmoil experienced after receiving a life-altering diagnosis, the evolution of pain and acceptance, and the profound lessons learned about love, strength, and gratitude. Through tenacity, the mother finds new purpose and appreciation for life, despite the impending loss.