Tell me all about it.
Tell me about your sorrow and heartbreak. And then about the confusion of feeling such despair while also experiencing inconceivable joy.
Tell me about your worries and the constant hum of fear that sits just under the surface of every moment and every breath and infiltrates your dreams while you sleep.
Tell me about all the thoughts that scare you. And then tell me about the shame that stops you from giving them a voice. The judgement and ridicule from people who cannot even begin to fathom this path can make this unbearable weight even tougher to bear.
Talk to me of rage at the unfairness of this one blessed life. Let’s commiserate about the magic formulas offered by TikTok influencers. These life hacks don’t stand a chance at tempering the crippling stress that accumulates after years of extreme caregiving.
Talk to me about the tears you have suppressed from the little moments and breathtaking ones when life has repeatedly reminded you that it will never ever be what you had imagined. Tears born of sadness, rage, resentment, and exasperation.
And then share with me the back breaking guilt that comes from daring to be sad that your child was handed such immeasurable pain and suffering. No matter the number of years that pass, people will continue to tell you that “everything happens for a reason” and “God won’t give you more than you can handle” and you will take it with a grain of salt.
And what about the silent prayer that parents like us whisper to the Universe to please let us outlive our child. Trust that I know that this plea is born of the most selfless and tender place in a parent’s heart. We must be brave in speaking this truth.
Tell me about your excruciating fear of having to leave your child behind in a world that does not protect the most vulnerable. This reality is more terrifying than having to live in this world without them; something we have attempted to prepare for since their diagnosis. Both outcomes are unacceptable.
I want to know about the dreams you had and still have for yourself and what your Plan B entails. Share with me all the things you hope to accomplish or experience before your own life ends. And tell me about the “meantime.” How will you tend to your own heart’s desire even if it can only be in snippets?
Tell me the ways you have made it this far in a life of which you did not dream? How have you have expanded this notion of ‘self-care’ into the immense undertaking of self-preservation and conservation?
Talk to me about facing each new day and night with resilience, undeniable strength and shreds of hope that shine a little light in the darkest moments.
And what about grief? Have you welcomed it as a companion on this adventure? We were never meant to “get over” grief or make it disappear in five linear stages. Instead, after the tea parties, welcome grief into your home as a lifelong guest. You will learn to carry it and adjust accordingly.
Tell me how you dread the future and the unknowns that you never, ever thought you would have to reckon with.
And I will tell you to trust that you will face them with the same grit and grace that have escorted you so far. These bonus years, as frightening as they can be, are a privilege denied to many.
And before you go, I will tell you that although it does not feel like it right now, you are not alone and you will survive and even thrive, however it all unfolds.
© Julie Keon 2026