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What I Wish I Could Have Told Myself on the Day My Daughter Was Born With Down Syndrome

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We are quickly approaching Alisa’s first birthday, and the anticipation and excitement at our home is palpable. As with any time of celebration, I have been feeling rather nostalgic, reflecting on where we were one year ago and where we are now. I’ve found myself thinking frequently, “If only I knew then what I know today…” If only I could have written myself a letter to read on the day of her birth, with all of the insight and knowledge I have gained through this year of growth as Alisa’s mom, what would I have said?

In celebration of her birth and with all the joy I have come to know through her life, I’ve written that letter below.

Dear Kara,

Congratulations on the birth of your second-born daughter, Alisa! She is the child for whom you have prayed and waited for years, and her arrival, finally, is like a long-anticipated kiss on the lips. She is beautiful — every tiny detail, every unique feature.

Even as your heart is filled with unspeakable joy on this day, I know your heart is also filled with many other emotions that you cannot even conceptualize right now. The waters of your heart teem with pride, love, and enduring commitment as you look into her almond-shaped eyes, stroke her bent ears, and hold her placid form. But beneath the surface of those waters, there is also a strong undercurrent of sadness as you begin to process the finality of her genetic makeup. For though the months leading up to her birth were filled with medical markers that indicated her diagnosis, still you had hope and faith that this might not be the case. Today, though, there is no doubt.

Welcome to the journey! You don’t want to hear any such phrase as this right now, I know, but with the passing of time, you will discover these words of welcome to be far less threatening and increasingly more encouraging than they seem today in the face of your mountainous grief.

I wish I could say that it will all be over soon and that your days will quickly return to “normal,” but I simply cannot. And while you think you have already endured the worst of it after facing 8 weeks of hospital bed rest and much understandable fear and concern over the health of your unborn baby, I unfortunately must tell you that there are many more hard days to come, starting with today, when they will unexpectedly whisk your brand new baby girl away to the NICU in just a few short hours.

However, I can promise that you will eventually discover a “new normal” that can be just as fulfilling, maybe even more so, as it was before you learned of Alisa’s genetic makeup in your womb. And while our nature as humans is to run from heartache and to hide from pain, you have been forced onto a journey now where you will learn that the greatest victories and the sweetest joys in life often arise out of our deepest struggles and our greatest heartaches.

In the coming days, weeks, and months of Alisa’s life, you will experience moments of paralyzing fear and humbling vulnerability. You will see in Alisa just how thin the veil is between this life and the next; you will recognize just how inadequate our hope of perfection is on this side of eternity. Though these things have always been true, you will truly begin to grasp their magnitude. You will come face-to-face with your lifetime habits of covering up weaknesses and of trying to make things appear “normal” and good to the outside world. But at last, because of precious Alisa, you will learn that we are never more real and normal than when we acknowledge our vulnerabilities and expose our imperfections.

As you walk through days that are intermingled with grief and joy, sadness and delight, you will find that these seemingly competing realities can coexist in a healthy manner. King Solomon understood this aspect of life when he wrote, “Even in laughter the heart may ache, and the end of joy may be grief” (Prov. 14:13.) You will discover that you can love your child with every fiber of your being even as you weep over what has been and what might be. Yet over time, this weeping will lessen as you come to know Alisa’s personality and nature, and you will slowly discover that your grief often has more to do with your own perceived losses and fears for Alisa than with any real lacking on Alisa’s part. Down syndrome, I can promise you, will not be your end. It will also be completely unlike what you expect and fear today, on this day of her birth.

Though on this day of Alisa’s birth, Down syndrome seems to be an insurmountable mountain, you will see that it is only one aspect of who Alisa is, that she is also so much more than Down syndrome. And just as the fog dissipates in the early morning air, you will slowly come to see that Alisa’s greatest obstacles in life will not result from her having Down syndrome; instead, they will come from the low expectations of this world. You, her mom, will have the greatest privilege of all in allowing her freedom to blossom and to exceed these expectations because she is a person, not a disability.

In fact, you will find that, as time passes, Down syndrome will enter your thoughts less and less. Alisa will simply become Alisa, your precious daughter, and it will only be through the questioning looks and often ill-informed words of others that you are reminded of her diagnosis. You will come to understand that your daughter has been born into a very hostile and foolish world, one that often will not value Alisa as she should be. In those moments when you hear the insulting, misguided, and brazen beliefs this world holds about people like your daughter, you will also see the wisdom of Proverbs 19:11: “Good sense makes one slow to anger, and it is his glory to overlook an offense.” Otherwise, you risk becoming consumed with an anger and bitterness that will do no one any good.

You will discover a new level of compassion and empathy that you had not known before, as you advocate for your daughter and show this world how gravely wrong it is. In a culture that sees delay and difference as threatening and “less than,” you will have the privilege of showcasing just how beautiful and fulfilling her life can be. Even as you discover these truths for yourself through Alisa, you can tell others that the things we often think matter most might not matter that much at all. As Dr. Seuss says, “A person’s a person, no matter how small.” Life is a mystery so marvelous that we must treasure it and protect it at all costs, no matter what form that life may take.

So for today, congratulations on the birth of your beautiful newborn daughter! Grieve, smile, weep, and rejoice. Feel no guilt as you process this new life you have been given. For what may seem a mistake, a defect, or an injustice today will change you for the better tomorrow and will transform your understanding of life forever.

And though you cannot even conceive of saying such a thing now, I promise you that in a year, you will find yourself saying, “I wouldn’t change a thing!”

With love from the future,


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Originally published: October 31, 2016
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