January 10, 2016
I remember the hours, days and weeks shortly after our prenatal diagnosis like it was yesterday. Sadness consumed us. We were grieving. No one died but we were suffering a loss. A very real loss. The loss of a life we had imagined. The loss of a dream. All the while trying to put on a brave face. It is what it is, I kept saying. Trying to be stronger than I felt. I was so torn, I didn’t want anyone to know and I wanted time. We were still trying to cope and I didn’t need or want to have to deal with other people’s thoughts, emotions or feelings on the matter. I wanted us to figure us out first. I couldn’t talk about it without getting emotional and I couldn’t handle condolences or “I’m sorry” or the look in people’s eyes.
While I couldn’t talk to anyone for the first month or two, I still needed something to help me process. I needed to read. I was so in the dark and it was so hard to access current information that didn’t scare the life out of me. What is Down syndrome exactly? Was it something I did? I remember taking an Advil shortly after getting pregnant. Was it that? I had never met anyone with Down syndrome. Didn’t it only happen to older women? I like to tell myself I’ve only just turned thirty. Ha. Who am I kidding? I tell everyone that.
I believe there are two ways of coping with a Down syndrome diagnosis. There are those that first need a hug, a shoulder to cry on and a good book filling them with hope, inspiration and feel-good stories filled with quotes you can fill a whole Pinterest board with. Then there are those that first need information, resources, access to early intervention, a handshake and a gift card to Staples to buy a binder to help them organize everything they are going to print. When I first started Baskets of Love it was my mission to have a book for each of these two types.
Hey Girl. You Can Do This.
The Guide puts you the parent first and reminds you, often, that there is no right or wrong way to travel this road. No matter what path you choose, whether you want immediate access to support and resources, or you need time to focus on your child and family first, the Guide supports you and your choice. You get the feeling that Jen and Mardra genuinely want what's best for you. Even if that involves "throwing this book through the window and enjoying your family, first and foremost".
One of the first things I encourage new parents to do is to meet other parents and babies with Down syndrome. It’s what started our healing and the feeling that everything was going to be okay. Meeting other moms and dads that just “got it” was incredibly therapeutic. Sometimes, though, new parents just need a little bit more time and they aren’t ready for the in-person support. I get that because that was me. Sometimes it’s just a person’s personality that will never get them to a support group. That’s okay too! While the Guide is filled with information, medical and otherwise, every chapter is also filled with “Our Experience” stories to help you feel connected. You are not alone.
For new parents, the "Terminology" section is a great bonus. Until I entered the Down syndrome community, I had NO CLUE about people first language or that it's Down syndrome not Down Syndrome or even Down's syndrome (note, in the United Kingdom it is still referred to as Down’s syndrome). I look back at my love letter announcing Conor's diagnosis and it is littered with incorrect terminology. None of which was intentional because I just didn't know. Shortly after receiving a Down syndrome diagnosis can be such a blur. You can feel so lost not knowing what to do or feel like you are drowning from information overload. The "What's Next" steps in the Guide are short, sweet and simple to help guide those in the middle of that blur.
The Guide touches on many aspects of this club that you wouldn't even think to know until you're a member. It incorporates the huge impact social media has recently made in the Down syndrome community. Facebook has become a lifeline for many. A connection to parents that are a few steps ahead, links to informative articles, resources, publications and feel good stories, videos and photos of cute kids for those not so great days. Most of the time it’s photos of cute babies with Down syndrome. Sometimes it’s photos of Ryan Gosling telling me “Hey girl, you can do this.” Thanks, Ryan. I know I can.
While I feel like an entirely different person than I was three years ago, we are still very early on our journey with Down syndrome. I know so much more now but I’m honest to admit there is so much more still ahead for us. The Guide isn’t just for new parents of a baby with Down syndrome. Reading the chapters on the years ahead from Middle School to Adulthood filled me with hope and promise while at the same time satisfying my need to consume knowledge about what may meet us down the road. The Guide feels like a hug and a handshake rolled in to one with the emotional support I need and the links to information and resources for when we get there.
I’ve met some pretty cute babies over the past 18 months since starting Baskets of Love. More importantly, I’ve met some incredible moms and dads. Some taking it one day at a time and others barely holding it together. All starting a journey they didn’t plan for. All welcomed to a very special club with our gift basket, a hug and if they are lucky, a high-five from Conor. I’m excited to now be including The Parent’s Guide to Down Syndrome in our Baskets of Love.
The Parent’s Guide to Down Syndrome is available for purchase at: