Nearly two years ago, I found myself sitting in a neurologist’s office, where I learned that my 2-year-old son had been diagnosed with Vanishing White Matter Disease, a terminal brain condition for which there is no cure. If I could revisit that moment, here’s what I would share with my past self…
The Initial Days
The next three days will be the most excruciating of your life. You’ll grapple with feelings of despair, questioning how you’ll muster the strength to move forward, find happiness, or reclaim any semblance of a normal life. Your existence will be irrevocably split into “before the diagnosis” and “after.”
The Year of Sorrow
For the following year, you will experience deep sorrow. The pain will be unlike anything you’ve ever felt, at times so visceral it almost seems physical. You may find yourself concealing your grief, as many around you won’t know how to respond. They will want to comfort you, but they can’t truly grasp the depth of your anguish. You’ll find solace in hoping they never have to.
Feelings of Anger and Fear
Anger will also take root within you. You’ll see carefree children and think, “Why does that child get to thrive while my son faces death?” You’ll recognize the unreasonableness of these thoughts, yet they will persist.
Fear will loom large—fear of the impact this will have on your family, fear of facing life after your child’s passing. You’ll understand that anticipating the inevitable won’t soften the blow.
A Shift in Perspective
Overwhelmed and fatigued, you’ll find it hard to believe that anything could change. But gradually, things will begin to shift. The anger will dissipate, and the fear will no longer haunt your nights. The worst has happened, and with that, you’ll discover there’s little left to dread. The pain may still return, but you’ll learn to cope with it.
Acceptance and Advocacy
You’ll start to accept your child’s fate while simultaneously fighting fiercely for the care he deserves. You will seek treatments and solutions, determined to spare others from the suffering you’ve endured.
A New You
You will emerge as a different person—one who is stronger and more compassionate. At first, you may long for the person you once were, but eventually, you’ll come to appreciate the individual you’ve become. Life will take on new clarity; you’ll stop squandering precious moments on trivial matters. Your priorities will sharpen, and you’ll find yourself becoming more empathetic and tolerant, traits that will also reflect in your children, making you immensely proud.
Finding Strength
Strength will become your new normal. People will often remark, “I don’t know how you manage.” In the beginning, it will be sheer necessity that drives you, but simply persevering will fortify you each day. Occasionally, you’ll catch yourself believing you can navigate this journey, and as your child continues to gift you moments of joy, those will begin to outweigh the sorrow.
Gratitude and Humor
Every day, you’ll cultivate gratitude for even the smallest acts of kindness from friends, family, and strangers. You’ll cherish the support surrounding you, as it becomes clear how deeply people care for you and your family.
You will transform your language from “someday” to “today.” Humor will find its way into your life again, even in the face of your child’s challenges, bringing a lightness that others may struggle to understand.
The Journey Ahead
The journey will not be without further heartache; you’ll come to realize that the pain of your child’s diagnosis is but a shadow of the grief you will face when he is no longer with you. In your sorrow, remember that the love, joy, and purpose he brought into your life will always outweigh the suffering.
You are not alone in this struggle. Overwhelmed moments will still arise, and doubts may creep in, but you will draw strength from the knowledge that you’ve persevered before and can do so again. You will never give up.
Additional Resources
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Summary
This heartfelt reflection provides an intimate look at coping with the diagnosis of a terminal illness in a child. It delves into the emotional turmoil, the gradual acceptance of the situation, and the transformative journey toward strength and gratitude. The author’s experience underscores the importance of resilience, community support, and the profound impact of love in the face of unimaginable challenges.
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