As I cradle my son, Lucas, I can’t help but reflect on that pivotal day from three years ago, September 3, 2015. Tonight, as we share laughter and cuddles, I’m struck by how much has transformed since then.
Three years ago today, amidst a discussion about his health, I heard the words, “The results indicate Trisomy 21.” In that moment, I felt like my world had crumbled. I often contemplate what I would say to myself if I could revisit that day, hoping to provide some comfort and encouragement. However, I realize that even if it were possible, I likely wouldn’t have been ready to accept or believe what I had to say.
It’s a challenging notion because I recognize that the feelings I have now have been shaped by the journey I’ve traveled, through both the highs and lows. Yet, as I reflect on those early days, here’s my heartfelt letter.
Dear Me,
Wow, even three years later, the emotions from that day still take my breath away. I remember vividly the whirlwind of feelings that engulfed me at that moment—an intense mix of numbness and raw vulnerability. I’m not here to bombard you with clichés or motivational quotes about everything being okay or how special people are chosen by God. Okay, I’ll say it once: “Everything will be okay.” I know it’s true, but I understand you’re not ready to hear it yet.
What I want you to know is that it’s perfectly fine to feel everything you’re experiencing. Allow yourself to grieve the child you envisioned—trust me, you’ll discover a remarkable child thriving in the NICU. It’s okay to worry about Lucas; he will, in turn, teach you about trust and acceptance. Yes, doubt your career path, but you’ll find that Lucas ignites a passion in you to educate others. You might worry about your family dynamics, but you’ll see that two years later, you’ll have a beautifully strong family of four.
There’s a quote from The Chaos of Stars that has resonated with me deeply. It’s often shared at weddings or in letters to loved ones. One day, not long after your diagnosis, I saw it paired with a picture of a parent holding their medically complex child, and it struck a chord with me.
Initially, I questioned if I would genuinely feel this way. In those early days, I was uncertain about signing up for the unknowns—health issues, developmental delays, and uncertainties. Would I recognize my son surrounded by a mountain of medical paperwork? But let me assure you, as I witness Lucas grow into his unique personality and embrace life, I realize it is true.
Please hold on to this message; you’ll have a moment when you’re holding Lucas, and this quote will resonate in your heart with profound clarity. I won’t spoil the actual day for you; it will be all the more precious when it arrives unexpectedly.
“I didn’t fall in love with you. I walked into love with you, with my eyes wide open, choosing to take every step along the way. I do believe in fate and destiny, but I also believe we are only fated to do things we’d choose anyway. And I’d choose you, in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you.” –Kiersten White, The Chaos of Stars
So, allow yourself to feel all your emotions. Process them at your own pace. It’s okay to have those overwhelming days when you need to cry in the shower. It’s okay for your heart to ache when you see Lucas striving for things others take for granted. Remember, for every tough day, there will be countless days filled with joy and laughter.
Right now, you’re in postpartum room 2213, overwhelmed by thoughts of Down syndrome and why this is happening. Know that the day will come when you’ll look into his beautiful, bright eyes and wholeheartedly say, “I’d choose you.” In every world and reality, I would recognize him as my son and choose him again and again.
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Summary:
After receiving a Down Syndrome diagnosis, the emotional journey can feel overwhelming. It’s important to allow yourself to grieve and process your feelings. With time, you’ll find joy and strength in your unique journey as a parent. Embrace every moment, and remember that love and acceptance will grow as you learn and adapt.
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