I can still recall the conversation with vivid details. I sense the pounding of my broken heart and remember the confusion in my muddled mind. I hear my weary voice as it trembles, and my body literally feels the heavy weight of physical grief as I remember my words.
I had already lived in the hospital an hour from home for 9 weeks, 8 of those weeks in my last trimester of pregnancy. I had laid in a hospital bed, praying for Alisa to arrive healthy and without any complications. At last, she came, with a few complications, and after a 6 day NICU stay, we finally made it home with our tiny, beautiful girl. In those quiet months after her birth, we had so much joy, and we felt great peace and thanksgiving over Alisa’s life.
But even in the midst of so much joy, sorrow would still visit me, too. Down syndrome had only been in my “mom vocabulary” since April of that year, when my obstetrician first suspected it of my unborn baby. Grief had become a familiar friend as we walked through a high-risk pregnancy, and though much grief had been spent and processed by the time Alisa arrived, some remained.
On that morning in December, I paced the hallway of my home, the old floorboards creaked beneath my bare feet. Four-year old Kate was off playing, or maybe she was watching a movie, and newborn Alisa was sleeping soundly. I found myself with a brief moment of alone time, in a season where aloneness was almost non-existent for me. My friend Natalie had called, and I took the opportunity during that conversation to process some of my new “special-needs mom” feelings with one of my best friends.
“You know one thing I just don’t get?” I had asked Natalie. My voice broke as I continued, deep grief fighting it’s way out of my heart through breathless sobs and warm tears. “There are some of these parents whose kids with Down syndrome are years ahead of us, and they say, ‘I wouldn’t change a thing.’ But you know what? I think they’re lying! Who would choose this for their kid? I wouldn’t. I would change it all.” I pressed the phone against my ear with my left hand, and I waved my right hand in the air as the grief-stricken words tumbled out of my mouth.
As any good friend would do, Natalie quietly listened, only offering occasional words of encouragement. “Sure you would. Of course!” she would say, and she gave a gift to me that morning — the gift of her time and the freedom to release my pent-up grief. It all came out that morning…my greatest fears, my deepest longings.
I told Natalie of my deep and abiding love for Alisa, but also of the agony I experienced knowing she would face unknown challenges physically, emotionally, mentally, academically, and socially, all because of her DNA. I wept, knowing this world is not accepting of people like her. I grieved for our unknown future, desperately wanting to know everything would be alright in the end. And in all of those feelings, I could not for the life of me understand how someone in a similar situation could say, “I wouldn’t change a thing.”
It has been almost two years since that conversation with Natalie. And while time has a way of rubbing the ache away from the fresh wounds of our hearts, I will always remember those difficult days of my pregnancy and the beginning months of Alisa’s life. That season of our lives was mostly quiet. Our days were filled with a deep and abiding joy in the gift of our two daughters, but that time was also punctuated by moments of assaulting grief as we felt our way in the dark, finding ourselves on a path we had never anticipated walking.
For some reason, I became lodged on the subject of whether or not I would change Alisa’s genetic makeup if I could. It was, in my mind at that time, the greatest question I faced, to search my heart and know where I stood on the reality of my daughter’s diagnosis. Could I accept it and even come to be thankful for it? Or would I always, deep down, secretly resent Down syndrome and wish it had never happened to us?
Would I, or would I not, “change a thing” if granted the opportunity?
Obviously, the question was really a non-issue, as it was purely hypothetical and not based in reality. I’m never going to be given a magical wand that would allow me to edit my life details. Still, finding an answer was very important to me. I eventually settled the matter in my heart by not really settling it all. Life was busy, the girls needed me, and we soon grew by one more through fostering, and eventually adopting, our son. Yet the question still resurfaced in my heart on many occasions.
Slowly, as time crawled on and the dust settled from our family’s many transitions, a change began to take place in my heart. In the beginning, I didn’t even see it coming because the transformation came gradually and unassumingly, until at last, I arrived at the answer I never thought would tumble from my lips: I really wouldn’t change a thing.
It happened first through my eyes adjusting. What had seemed so abnormal, so unnatural, slowly became to me a greater and more glorious “normal.” I grew to know Alisa, to understand her personality and to see her humanity. I discovered Down syndrome is not something to be feared or silenced; it is something to be understood and accepted. I marveled at the joy and peace Alisa brought to the lives of others, and I realized, perhaps, maybe she wasn’t the one who needed to change, after all. Maybe she wasn’t the one lacking. Maybe it was me.
My daughter, who happens to also have Down syndrome, is an incredible light in a dark and hurting world. Her development may be delayed, but she is not lacking in the intrinsic value and worth that should be freely seen in all humanity.
Down syndrome is not a quality that takes away from Alisa but is one that adds to her life and to those who have the privilege of knowing her. I could not imagine removing Down syndrome from Alisa because it is a part of her. Down syndrome makes Alisa who she is, just as her skin, her hair, and her eyes all play a part in the physical makeup of my daughter. In fact, I believe having Down syndrome has granted Alisa an extra ability to love freely and to give joyfully. I cannot imagine life without Alisa…this Alisa, the one I know and love and enjoy every single day.
But there’s something else, too. There’s more. Our journey in getting here, with all of the pain and heartache, with those moments of assaulting grief and the weary days and nights…surprisingly, I wouldn’t change any of that, either.
Our journey with Alisa has forever changed my understanding of human suffering. Do I like to suffer? Of course not! Do I look forward to more heartache in this life? No way. But do I see the grace of God in taking our suffering and using it to mold our hearts and refine our ways? Absolutely.
I understand now that, no matter how hard we might try prevent it, suffering is inevitable in this life. Futility is not found in the place of suffering itself but in striving to avoid or ignore suffering at all costs. The strength of our character does not shine in the moments when life is good but in the moments when the storms of life rage in our own personal worlds. And the goodness of God, the grace of His enduring love and the tenderness of His Fatherly care, is best discovered in those moments when our hearts are weakest and our souls are most broken.
I can now agree with the astonishing words of Joni Eareckson Tada, who became a paraplegic after a tragic diving accident 50 years ago: “It sounds incredible, but I really would rather be in this wheelchair knowing Jesus as I do than be on my feet without him.”
I even understand, to some extent, the baffling words of Aleksander Solzhenitsyn, who came to know Christ during his hellish years in Stalin’s communist labor camps: “That is why I turn back to the years of my imprisonment and say, sometimes to the astonishment of those about me: ‘Bless you, prison!’ I...have served enough time there. I nourished my soul there, and I say without hesitation: ‘Bless you, prison, for having been in my life!’
I would never sugarcoat the pain I felt when we first learned of Alisa’s diagnosis. I cannot deny the grief I carried or the penetrating questions I had of why God would allow it. But none of that takes away from the love I feel for Alisa or the beauty of her life. Time has passed, and I now see so much good has come from so much heartache. Our bitter season of weeping and questioning is over, and I see with new eyes that God did not let the pain go to waste. He never does.
He redeemed our suffering. He softened the rough edges of our lives, and He gave us eyes to see the world more clearly. He didn’t take away from our lives by giving us a daughter with Down syndrome; He blessed us by expanding our world and giving us the privilege of having Down syndrome in our lives.
And now, two years later, I have discovered the question that plagued me in the beginning is not the absolute I tried to make it out to be. None of us can go back in time to change what has already been, but we all can find peace in the past and hope for the future. There is meaning to our heartache and redemption of our pain in Jesus Christ.
In that hypothetical game we all like to play, would I change a thing if I were magically given the chance?
Absolutely not. Without a doubt, I would not change one thing.