Almost two years ago, we found ourselves in a neurologist’s office, where we learned that our two-year-old son, Ethan, was diagnosed with Vanishing White Matter Disease. This terminal brain condition is untreatable and incurable. If I could travel back to that moment, here’s what I would share with myself…
The Initial Shock
The next few days will be incredibly challenging. You will struggle to see a path forward, to envision happiness, or to comprehend what a “normal” life might look like again. Your life will be distinctly marked by “before the diagnosis” and “after.”
The Pain of Grief
The pain you’ll experience over the next year will be immense. It will feel almost physical at times, and you may find yourself concealing it, as many around you won’t know how to react. They will want to help, but the truth is, they can’t fully grasp the heartache of knowing your child is facing a terminal illness. Deep down, you hope they never will.
Grappling with Anger
You will grapple with anger. You might find yourself looking at a seemingly spoiled child and think, “How is it fair that this child gets to live while my son has to suffer?” You’ll know these thoughts are unfair, but they’re part of the journey.
Living with Fear
Fear will become a constant companion, as you worry about the impact this will have on your family and what life will look like after Ethan is gone. Understanding what lies ahead won’t make it any less daunting.
Finding a Shift
Over time, however, things will start to shift. The overwhelming anger will begin to fade, and the night terrors of fear will lessen. You’ll realize that the worst has already happened, and that leaves little left to fear. While the pain may linger, you will find that it doesn’t dominate your days as it once did.
Embracing Acceptance
Acceptance will gradually take root, even as you continue to fight fiercely for the best possible care for Ethan. You’ll seek treatments and advocate so that no other family has to endure this kind of heartache.
A Transformative Journey
You will transform in ways you never imagined. Initially, you may long for the life you had, but eventually, you’ll grow to appreciate the person you’ve become. Life will gain a new clarity, and you will begin to prioritize what truly matters. You will cultivate kindness, compassion, and tolerance, and you’ll take pride in the way your children reflect these values.
Emerging Strength
Strength will emerge from your trials. People will often remark, “I don’t know how you manage.” At first, you will carry on out of necessity, but each day will build your resilience. You will start to believe that you can navigate this path and that the joy your child brings to your life will outweigh the pain.
Valuing Every Moment
Every moment will feel precious. You will experience genuine happiness, perhaps even more than before Ethan’s diagnosis, because you will learn the value of time. Friends, family, and even strangers will rally around you, and every act of kindness will resonate deeply within your heart.
The Power of Humor
You will learn to embrace humor, even in the face of adversity. While some may feel uneasy with your jokes about illness, laughter will become a cherished coping mechanism.
Facing Future Challenges
You will come to understand that the greatest challenges are still ahead, and the pain you felt at the diagnosis will be dwarfed by the grief to come. Yet, you will also hold onto the belief that the love and joy Ethan brought into your life made every struggle worthwhile.
Finding Comfort in Community
You will find comfort in knowing you are not alone. There will still be moments of overwhelm, but each time you question your strength, remember that you’ve faced hardship before and emerged stronger. You will never give up.
Additional Resources
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Conclusion
In summary, the journey through a terminal illness diagnosis brings profound pain, but it also leads to unexpected growth, appreciation for life, and the strength to face whatever comes next.