Picture This…

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. But the doctor is spending a lot of time with your baby and the nurses are whispering softly to each other.

**What is happening? Why have I not seen my baby yet? She should be lying on my chest. Skin to skin is important, people! Why is everyone so quiet? How much does she weigh? What does she look like? Why is this taking so long?**

Finally, the doctor approaches you and says something that takes a long time to sink in.

“I’m sorry. We suspect that your baby has Trisomy 21—Down syndrome.”

Something strange happens to you in that moment. You are shivering and sweating all at once. You got an unexpected surge of adrenaline when the doctor said those words. Your mind is spinning, your thoughts are racing, and you can’t breathe. It is hard to comprehend anything because everything seems to be bombarding your brain all at once.

**What did he just say? Down syndrome? I think I’ve heard of that before. What does it mean? Is this bad? Why did the doctor just walk away? What is happening? Did he say he was sorry? Why is he sorry?? Should I have known about this before? Did I do something wrong? How did this happen? What is Down syndrome, again? What does it mean? Where is my baby? Why can’t I hold her yet? Is she okay? What does she look like? Why is this happening to me? Why is this happening to her? I love her so much. How long will I be able to love her? What is the life expectancy of people with Down syndrome? Will she ever talk? Will she walk? Will she be happy? Will I? How common is Down syndrome? I don’t know anyone who has it—it MUST be rare. The doctor walked away. Why did he walk away?! I have so many questions! I feel so alone.**

And then you are handed your beautiful, perfect, amazing newborn baby who just happens to be rocking an extra 21st chromosome. You have just become one of the lucky few and you don’t even know it yet—because no one was there to tell you. No one was there to tell you how amazing this journey would be. How much you have to look forward to. How you just became part of an AMAZING tribe connected by one single extra chromosome. How truly lucky you are.

Those first moments, days, weeks, and months can be scary. There are so many more unknowns now than there were before. This time can be isolating, lonely, and confusing. But one thing is for sure– NO ONE should feel alone in a time like this.

This experience, or something similar, is not uncommon for parents receiving a Down syndrome diagnosis. Some are much better; some are much worse.

This is where Down Syndrome Diagnosis Network (DSDN) comes in. DSDN is a non-profit organization that launched in 2014. The mission is to care for new and expectant parents of children with Down syndrome by providing information, connections, and support. In 2018, DSDN reached out to over 5,000 families worldwide. Let that sink in for a minute… FIVE THOUSAND families!

DSDN’s vision is to ensure families have unbiased and factually accurate diagnosis experiences, every time, through which families quickly know they’re not alone. Currently, DSDN reaches about 15% of families with a new diagnosis annually and supports over 10,000 families that have a child with Down syndrome, with an emphasis on diagnosis and early childhood.

I can say from personal experience that DSDN is absolutely amazing. Since beginning this journey with Jade a little over two years ago, I have learned so much and been connected with some of the most incredible people through DSDN. I cannot say it enough… This work is so important. It is incredible how comforting it feels to meet and know so many other moms/dads who are on the exact same journey as me. It makes the tough parts easier, the happy parts happier, and the scary parts just a little less scary. I wish I could explain better just how amazing DSDN is. I truly believe in the work DSDN is doing because I have been on the receiving end of the immense amount of support, comfort, and connections that DSDN provides. They are changing the world!!! (They changed my world, anyway…)

If you have a baby with Down syndrome (or know someone who does) PLEASE do yourself a favor and get connected with DSDN. You will not regret it.