The Most Important Thing I Did After My Son Was Diagnosed With Down Syndrome


Dear Sharon,

I know you feel like someone has turned off the lights and left you in a dark room without a door. You went into labor expecting that your growing family would look like all of the other families you know. Now, you’ve found out that your son has Down syndrome, and you feel completely alone. Your family and friends don’t know what to say, and you have no idea how to navigate this new terrain on your own. The isolation you feel is almost crushing.

For this reason, as quickly as possible and with great urgency, you must search for someone who will travel alongside you on this new road, with an empathy that comes from having been where you find yourself now. This is the person you are looking for:

Someone who isn’t too far up ahead on this road — there’s no need to hear about the challenges that may arise in the future. Find the person who is only a footstep or two out in front or a person who finds herself in the same place as you. You will restore each other’s strength as you walk side by side.

Someone who can be physically present at times — you need to be able to look in their eyes and see how your feelings resonate in their soul. And you’ll want to hear them laugh, which will reassure you that laughter is still part of the journey.

Someone you like so much that you’re grateful for whatever reason brought you together — you wouldn’t want to have missed knowing them in this life. If it took the diagnosis to bring you together, then the diagnosis has brought you a blessing. (The first of many, although you don’t realize this yet.)

I can’t promise you that everything up ahead will be OK; I really don’t know for sure. But I can promise you that you’ll make it through whatever lies ahead if you find this friend to travel with.

Oh, and as soon as you’ve walked together a bit and your strength has been renewed, be this friend for someone else who is just starting out on the path. Make yourself available, shower them with the understanding and compassion that springs from your shared experience, and watch how they move from despair to hope because you’re by their side. There you will find meaning in the diagnosis, and then you will embrace it with an appreciation for its unexpected blessings.

I know you’re going to learn to love the journey.

— Sharon

Traveling Friends

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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