Almost two years ago, I found myself in a neurologist’s office, grappling with the heartbreaking news that my 2-year-old son, Jamie, had been diagnosed with Vanishing White Matter Disease—an incurable and terminal brain condition. If I could go back to that fateful day, here’s what I would whisper to my past self…
Brace yourself: the next three days will feel like an eternity. You’ll find it hard to fathom how you’ll continue, how joy could ever return, or how life could ever feel normal again. Your existence will be split into two eras: before the diagnosis and after.
The year ahead will be filled with an ache that’s indescribable. At times, it’ll feel like a physical weight pressing on you. You might hide your pain from others, as they won’t truly understand what it means to face the reality that your child is facing a grim fate. They will want to help, but deep down, you’ll wish they never had to know this kind of pain.
You will experience anger—seeing other children thriving may provoke thoughts that make you cringe. “Why does that child get to live while mine suffers?” You’ll know it’s a terrible idea to think this way, yet those feelings will creep in.
Fear will also become a constant companion. You’ll worry about how this will affect your family and the uncertainty that looms after your child’s passing. Understanding what’s ahead won’t ease your burden; it’ll only add to it.
But here’s the silver lining: over time, things will gradually become manageable. The anger will begin to fade, and the fear won’t keep you awake at night as it once did. Once the worst has happened, you’ll realize there’s not much left to fear. The pain will still come and go, but you’ll find moments of respite amidst it.
You’ll start to accept Jamie’s fate while passionately advocating for proper care and treatments, hoping to spare other families from similar heartache. You’ll never revert to the person you once were; instead, you’ll evolve into someone better—someone who appreciates the beauty in simplicity.
Life will take on new meaning. You’ll shed the trivial worries that once consumed your thoughts, prioritizing kindness, compassion, and understanding. Your children will reflect these qualities, and you’ll beam with pride at the individuals they’re becoming.
Strength will find its way into your being. Initially, you’ll push through because you have no choice. Each day you persevere will build your resilience. You’ll begin to see that it’s possible to cope, and the gifts Jamie brings into your life will start to overshadow the pain.
Gratitude will wash over you for the little things, and you may even find unexpected happiness—happier than you were before receiving the diagnosis. You’ll understand that every moment counts and that there’s no time to waste.
Your friends, family, and even strangers will rally around you, offering support that will feel deeply personal. You’ll treasure their kindness and learn to embrace a new appreciation for those who care about you and your family.
You’ll stop procrastinating—“someday” will morph into “today.” You’ll even find humor in Jamie’s situation, making jokes that might make others squirm, but laughter will become a vital part of your journey.
You will know that the hardest moments are yet to come. The pain of losing Jamie will be a shadow of what you felt when you first received that diagnosis. In your grief, you’ll strive to remember that it was all worth it; your child brought immeasurable joy and purpose into your life.
And as overwhelming as things may feel, you’ll recall that you’ve faced challenges before, and you’ll do so again. Giving up will never be an option.
In summary, the journey through grief and acceptance is rife with challenges, but it also holds unexpected blessings. Embrace each day fully, knowing that even in the depths of despair, there are moments of light, laughter, and love.
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