Ups and Downs of Social Media: Part 1

I will be forever grateful for what Social Media has done for me and for Jackson since his diagnosis.  I have found places for comfort and camaraderie with other moms of children with DS. Some of these moms have already become some of my dearest friends.  I have found places where moms share information that helps us keep Jackson relatively healthy and puts us in contact with doctors from across the country who have become part of Jackson's awesome medical team. I did not even know Facebook groups existed before Jackson was born, and now they are a daily source of encouragement and new ideas.

But with the amazing highs from this connectivity also come some pretty horrible lows.  Being a part of a community of people whose children are considered "medically fragile" can also be devastating on a rather regular basis.

Today I checked my Facebook newsfeed as I typically do while Jackson naps, and two posts jumped out at me instantly and immediately hurt my heart. One family's child with DS was rushed to the hospital and diagnosed with leukemia, and in Australia, a family lost their beautiful four-year-old son after weeks of fighting an infection. He also had Down syndrome.

Most times, I feel so strengthened and empowered by what I see and learn through my Down syndrome-related groups and friends. But then a day like this happens. I sit and look at these precious children with tears streaming down my face, and I wonder if my heart can handle more stories like this. I do not know these families, but I share in their fear and their pain and their grief.

I would like to say that days like today are rare, but unfortunately, they are not.  I haven't kept track, but it seems like it is about every other week when I read of another child with Down syndrome who is fighting for his or her life.  This constant barrage of grief and fear takes its toll, and though we have been lucky with Jackson's health so far, I feel I am waiting for the other shoe to drop. I know all parents worry about their children, but constantly seeing real-life examples of life-changing/ending illnesses that happen to other children with the same diagnosis as my child takes it to a different level.

So why do I do it? Why do I continue to view my Facebook newsfeed day after day?  Because I know that I can go into one of my groups and express my fears, and other moms will acknowledge them and truly understand how I feel. These mothers are "my people, my tribe"; they get "it" like few others do. So when one of our children faces something that keeps us all up at night, we rally in support because we know they would do the same for us. When one of our families suffers every parent's worst nightmare, we reach out across states, countries, oceans, and digital highways to express our grief. It is not the kind of rallying we like to do, but we know we must. Because when we look at the pictures of these sweet angels, we see echoes of our own children staring back at us through those beautiful almond-shaped eyes.

I have not experienced that kind of community many times before Jackson entered this world.  Ironically enough, these are the exact connections I thought would not happen after we received Jackson's diagnosis. I feared an extra chromosome would ostracize us, but instead it has ushered in a completely different level of understanding and relationships. And without social media, it would have taken me much longer to reach out, get connected, and find my fellow warrior moms.  So I will take the heartache and fear because the ups of this type of social media connection really do outweigh the downs.

If you haven't connected yet with other moms of children with Down syndrome, check out 

Down Syndrome Diagnosis Network.