Dear Me, Congratulations on the Birth of Your Son With Down Syndrome!


Dear Me,

Congratulations on your new son!

I know, I know, it doesn’t feel like quite the right sentiment, but it is. Accept that word. It is right.

Not all will say it, but the best doctors nurses, friends and family will. It may land a little funny, like a home run that bounces over the fence. Momentarily it doesn’t feel perfect, but all home runs are perfect.

Focus on the first thing the pediatrician who held your baby boy out to you said, “He’s beautiful.” Her next sentence was something about there being possible markers for a genetic condition, but don’t even worry about that yet. Part of you knew what she meant right then and there anyway. You even said the words “Down syndrome,” but your heart wasn’t ready to believe it; it was protecting those first precious moments. But later, when your whole self is ready, you will hear it. And, as unbelievable as it sounds, at this moment when your world is turning upside down, in four and a half years you will actually behold Down syndrome as a very important, even beloved part of your life.

But for now, go ahead and cry. Let it out. Be easy on yourself. Grieve the loss of how you thought things would be without placing guilt on yourself. Then… Suck. It. Up. Because in that little boy’s eyes everything is just as it should be and he needs you. There is no tragedy or crisis in his eyes. There is just a new little soul that has arrived on this earth and you are his momma.

The experiences you weather over the next few months will be the measuring stick you will use to psyche yourself up for all uncomfortable or intimidating situations from here on out. You will draw bravery, confidence and courage from this change.

Let’s face it, if you can hand over your three month old to a stranger who will actually stop his heart in order to fix it, you can do anything. And yes, I’m talking about surgery here. I know that’s terrifying, but just know that today I saw your son wrestle his older sister to the ground just before they both, simultaneously, broke into a fit of laughter.

So, also know that it all turns out OK.

You are changed. You got no warning, no choice, but from here on our life has changed. And although it is uncomfortable now, in just a few months you will not be able to imagine your life any other way.

Do yourself a favor, don’t compare your baby to the adults that you know or come across who also happen to have Down syndrome. Would you compare your 2-year-old brunette daughter to a 40-year-old brunette woman? In fact, don’t compare at all. Someone wise (Theodore Roosevelt) once said: “Comparison is the thief of joy.” This applies here, too.

And speaking of joy, it is there. Right there. Hold him. That will channel the healing. His little warm, swaddled body will be like a salve for your soul. That’s what will anchor you in the days to come.

Remember when, in his own grief in the dark early hours after your son’s birth, your husband said that he “can’t do this again?” Recognize it as what it was, a statement of emotion. He will rally more quickly than anyone. He will be the rock that you need and he will adore your son. Give him 24 hours. I’m here to tell you that you will have another baby and it won’t be all that scary. The possibility of a Down syndrome diagnosis won’t even really be unsettling by then. And those babies will be brothers first and foremost. They will fight and love like brothers do.

Appreciate the doctors and nurses who are straight up, the ones who are honest about the fact that there will be obstacles. There is a list of health concerns that are more common in people with Down syndrome. The good news is, unlike with your other children, doctors can provide you with that list so you can be proactive within reason. Ask for it. Read it over when you’re ready, and then file it away somewhere for reference where it won’t distract you from the joy.

Now let me tell you something magical. Your new son has ignited a spark in you. You are about to see, feel and believe in miracles. You will find a whole new purpose that was in you all along. You will connect with parents across the country. You will cry more, but most of the time it will be because your heart can’t contain the joy that fills it like a waterfall.

Your son will inspire events. His mere presence will cause thousands of dollars to be generated for good. He will pull your family closer, like a magnet. He will inspire others’ career choices. He will be a catalyst for you knowing what real faith is. Like the ripple caused by dropping a stone in a still pond, he will spread love, acceptance and joy. He will drive you absolutely crazy with the trouble he’ll get into as a toddler, but not more so than other typical toddlers drive their mothers crazy. He will be more alike than different. He will be ready to leave the hospital just four days after a full open-heart surgery, even though the doctors prepared you for a one to two week stay. He will play tee-ball, tennis and tag with his brothers and sister. You will come to love Down syndrome and all that it has done for your world.

Daily, you will see others who seem to be just going through the motions and you will feel like you know a secret. You know how damn beautiful life can be because your son has changed the way you see the world. Strangers will walk up to you during routine errands and tell you treasured stories of their own loved ones. You will feel more deeply than you knew possible.

All in all, your life will be ordinary, all the while being extraordinary.

Hang in there. Go through the pain. Deal with it. Lean on your friends and family. Use gratitude and appreciation of the love people give to keep you afloat.

And, once again, congratulations on your beautiful baby boy.

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