When Your New Baby Has Down’s Syndrome What’s Gonna Be Yours

Did I ever tell you about my cousin, Mirele?

Mirele was born six months after I was. We would have been best friends had she grown up into the cousin I expected her to be. Our families were so close, she would not have been only a cousin; she would have been my sister. My favorite sister, because the ones I had, personally, I would have gladly traded for better models.

But Mirel did not grow up into the favorite sister I wished for, because something had gone wrong when she was born and in those days, we called kids like her “retarded.” It originally meant, “less advanced in mental, physical, or social development than is usual for one’s age.” But then it became a not-nice word to say about such kids, so the new word today is “special needs.” She made me a little nuts because she was pretty loud at times.

So, Mirele was my special needs cousin. She still is. She looks a little different, acts a little different, and talks a little different. She also has a great sense of humor. When we invited her to our Chanukah party, she said, “Mindy, you know special needs people like me need to go to sleep early!”

When she saw me putting on makeup, using my lipstick as blush because I was too lazy to find my blusher, she said, “Mindy, you silly! You don’t put lipstick on your cheeks!”

“Then where should I put lipstick?” I teased her, good-naturedly.

She laughed, and teased me back, “On your eyes!”

Mirele hasn’t gotten quieter, but something hasn’t gotten quieter inside of me over the years growing up with her. We are family and families stick together. That’s all.

Now, many of you are reading this and thinking about your own little brother or sister that was just born. And there’s lots of feelings you may be feeling, lots of thoughts you may be thinking. Can we talk about them? Like, maybe because I had my own Mirele, maybe I can help you understand yours? And also, just by the way, because I am a therapist and therapist knows things? (Yes, I am a therapist, didn’t you know that? And probably Mirele is one of the reasons I became one. When we have hard stuff happening to us as kids, believe it or not, it makes us want to help other people. So maybe your Mirele will teach you something so you can help others? And then I can relax and YOU can write articles!)

So what’s the deal? How did you find out your new sibling has Down’s Syndrome?

Were you shocked? Angry? Angry at whom? Your mother for bringing home a defective baby? At Hashem for messing things up so badly for you? Sad? Were you waiting excitedly for this baby? Thrilled finally to have a baby in the house again? A little sister to dress up and show off and kiss to pieces?

Were you embarrassed? Ashamed to show your friends a less-than-perfect baby? Of how your brother looks with those pronounced Down’s features?

Or maybe you just denied the whole thing and pretended to your friends that everything was normal? Maybe you didn’t believe—you still don’t believe—anything is wrong with your little sister. She looks fine!!! The doctor is making things up! You want to yell at your parents to stop bringing in these stupid articles into the house because your brother is NOT, not, not, a Down’s baby. So there!

Maybe, you are having a completely different experience. Maybe you love your little new baby, but your father looks miserable. Your mother is crying all day. You wish they could pull themselves together and realize how cute, how special, how incredible this new baby is. Maybe you wish your parents can grow up, like really grow and realize that Hashem would never do something bad to your family and if He gave you this adorable baby then this baby is perfect the way she is, perfect for your family.

It’s a little scary—OK—maybe a lot scary, that your parent is not being parent-ish right now. How are you supposed to manage with this big, confusing new reality, if the adults in your life are not managing at all?

Especially if you have so many questions. Question like, “Why would Hashem do this to me, to us?” Or, “How should I tell my friends? I am afraid they will look differently at me. Pity me. Make fun of me behind my back.” Even, “How do babies get Down’s Syndrome? Is it catchy? Does it mean I will also have a baby like this when I get married?”

It’s possible you want to know why this little baby needs so much therapy. Why so many strangers need to come in and out of your house all day long. It feels like an invasion of your privacy to have so many therapists and volunteers. You hate feeling like a nebich case.

So many questions. It feels like so many new problems.

Maybe it’s your older sister that is acting like the world collapsed. Maybe it’s you. Maybe your younger brother, the big tzaddik, is making you absolutely, positively very nervous when he says things like, “It’s not so bad.” or, “You will see how having our new baby is the best thing for our family, for you,” or, “Hashem knows what is best for us, for you, for our family,” and you want to scream, “Oh yeah? It doesn’t seem like it!”

You are not in the mood, whatsoever, for a tzaddik in the family in the family right now, thank you very much.

And you are not, not, not, not, not, not NOT in the mood of your grandparents right now. The ones that look at you with these sad eyes, the ones that are shishkening all day to your mother, the ones who make your mother cry with talk of giving away your baby, the ones who don’t know how to pick up your adorable new baby and squish him up, because he is so cute and how can they not realize that?

Whew.

Who could have ever imagine that six pounds (the same amount that your mother used to make challos out of?) could turn your life upside down in a single second?

It’s going to be a journey, Kid. Not an easy one, but not as hard as you thought either. Things are going to settle into what is called a “new normal.”

How will that happen, you want to know?

You will find someone who can answer your questions, listen to your worries and fears. Help you tell your friends. Your mother, your father, your grandmother, older brother, a good friend, your teacher. Maybe even a therapist (we are normal, promise!). Somebody who gets it. You will grieve the baby that wasn’t born and love the one that was. You will grieve the type of sister you wished for and find a different kind of magic with the baby you have.

Time will pass and it will feel less painful. This baby will actually be cute. Smile at you. Hold up her hands so you can hold her. Be fun to play with. He will bring his own joy into your house. Your family will come together again. You will grow to be a more sensitive person, stronger, with deeper relationships and more appreciation for Hashem’s world and your life.

Mirel may not be the cousin I expected, but she’s mine, she’s family, and I love her.

And sometimes, that’s all that matters.

Originally published in Sparks Magazine, a division of Rayim