Now Picture This…

Now picture this: You are about to become a first-time parent. Your baby is on the way and things are happening fast. You’re scared because you have never experienced this before and there are a lot of unknowns.

**Am I going to be a good parent? What will my baby look like? Do I have everything I need? Will I be able to function with such little sleep? Is the nursery perfect? How soon should I start reading to her? Do I have enough books? Do I even know how to hold a baby? How do you change a diaper? What if I can’t make her stop crying? I love her so much already; I think I might burst when I see her! This is crazy.**

Now the hard part is over (ha!) and your baby is here. She cried as soon as she came into this world… you know that is a good sign. Your baby was put on your chest right after she was born. You were told this was important and now you know why. She is so beautiful. She is perfect. You have never felt a love like this. Your thoughts are racing, but everything feels so peaceful. This is your baby! A few minutes later, the doctor comes over and tells you that your baby is perfect with 10 fingers and 10 toes. The doctor then tells you that she is going to take the baby to clean her up and check her out.

**That seems normal. All newborns are probably checked out, right? Right.**

One of the nurses comes over and tells you how amazing you are. “Giving birth is not an easy task,” she says, “and you were incredible. Congratulations on your beautiful baby.”

The doctor seems to be spending a lot of time with your baby… but this is your first baby so you assume that is normal. The room seems quiet and you are peacefully enjoying the extreme burst of hormones and bliss of just having birthed a baby. There is a quiet battle going on inside you between peace and literally every emotion in the world. Thanks, hormones.

There is a nurse with the doctor next to your baby. She tells you that your baby weighs 7 lbs– a nice, healthy weight. You are ready to hold your baby again and wish the doctor would hurry up.

Finally, the doctor approaches you, hands you your new baby and smiles. “Congratulations! Your baby is absolutely beautiful.” She pauses, looks meaningfully at your birth team, and takes your hand.

“I believe that your baby has Down syndrome.”

This takes a long time to sink in. The doctor does not let go of your hand, but she does give you a minute to process what she just said. And then she continues, “We will have to do a test to confirm the diagnosis. Down syndrome occurs when there are three copies of the 21st chromosome instead of the typical two. I understand that this is not what you were expecting, but let me be the first to tell you that you just hit the jackpot. Congratulations. Your life will be more enriched with love and laughter than you ever thought possible. This may seem scary right now and I understand that there are probably a million questions swimming around in your head, which I will answer as soon as you are ready to ask them… but this journey will not be nearly as scary as it feels right now. You are not alone and you will meet some of the most amazing people on this journey. Your daughter is going to do amazing things. If you do not limit her, she will not be limited. She can play sports, go on dates, go to college, have a career– all the things you would expect for any child. If you decide to have other children, she will have a typical sibling relationship with them. They will fight and be best friends. Your other children, along with everyone else she meets, will be better from knowing her. I can’t tell you what her future will look like, similar to how I can’t tell you what any newborn baby’s future looks like… but I can tell you that you have a lot to look forward to. This diagnosis does not define your baby. She is beautiful and perfect. You are incredibly lucky.” And then the doctor hugs you and kisses your baby.

And you cry. You cry so hard because you have so many feelings and you just don’t know what else to do. Crying seems to be the correct response. You cry because you are happy. You cry because you are sad. You cry because you are excited. You cry because you are nervous. You cry because the doctor just told you that your baby is different, but that she is actually going to be more alike than different. You cry because you still have the amazing team around you who helped bring this beautiful baby into the world. You cry because you are now a mom and that alone is unbelievably exciting and scary and amazing all at once. You cry because that’s what you do when you have so many emotions bubbling over. You cry.

Through the tears, you look down at your beautiful, perfect, amazing newborn baby who just happens to be rocking an extra 21st chromosome. None of the love you initially felt goes away– in fact, it seems to grow.

Then, the doctor tells you about an organization called Down Syndrome Diagnosis Network (DSDN) whose mission is to care for new and expectant parents of children with Down syndrome by providing information, connections, and support. This is comforting. You look up DSDN and are quickly connected with other moms who have a baby with Down syndrome. In the days, weeks, and months ahead, you rely on those women SO MUCH. They seem to be the only ones who truly understand your journey and they quickly become great friends.

And it doesn’t take long for you to realize that you DO have everything you need, you DO know how to hold a baby, and you CAN function with so little sleep.

And, you start reading to her right away. 

THIS is how a Down syndrome diagnosis should be. It should be positive and encouraging, not full of apologies and scary. This is what DSDN is working toward. They are changing the diagnosis conversation and I am so excited to be a part of this movement.