Family by Diagnosis

When your child shares a diagnosis with other children you can’t help but identify with other parents. When you look at the faces of those other children you can’t help but see your own child’s face. You share the joy and excitement of their accomplishments and rejoice together over good news received. And you share in the grief and heartache when the news is the worst kind of news. You weep for children you’ve never met and pray for mamas too far away to wrap your arms around. 

A diagnosis grants you entry to a family you never knew existed. A different kind of family where all those children are my children and my child is not only mine but everyone else’s too. Each one different and unique. Each one loved fiercely by a community near and far. 

Most of the time, it’s really awesome to be part of that family. Our children are hilarious. They have the best smiles and the biggest hearts. In fact, many of us secretly believe we’re the lucky ones – that being a part of this family is a gift. But sometimes, when the bad news is coming from all sides – when the bad news is the worst kind of news – sometimes being part of this family is…well…sometimes we wish we didn’t have to be part of this family. Wish we didn’t know the grief. Wish we didn’t feel the pain. 

In those times, there is helplessness and heartache. There is why. Why is this happening? Why is there so much suffering? Why must it be our children who suffer? We ask God our why questions and in the midst of our questioning we are thankful that He can handle them. He loves us and knows we can’t understand. He wraps His peace around our hearts and tells us it’s ok to weep, to doubt, to be angry. He loves our babes even more than we do. 

Sometimes we get to witness a miracle. A divine intervention or healing. Sometimes we witness God calling our babes home long before we’re ready for them to go. And together this family rejoices and grieves. Together we carry on knowing that tomorrow or next year or ten years from now it may be my child this family prays over, my child receiving bad news. We celebrate each milestone, grieve each tragedy. Living through each up and each down of each child with one another all across the world. 

Because we have a secret. We know something no one else knows. We really are the lucky ones. We feel the sharp sting this diagnosis brings to each of our lives every single day. But we also feel the elation that comes from defeating it – even in the very small victories. And we know what it means to give our children to God, to trust Him with their lives, in a very real way. We know what His peace feels like. We know His strength – we depend on it for survival. 

Today is a day of questioning. A day of “why”. A day of grieving for children thousands of miles away. Today is a reminder of how precious time with my child really is, of how finite our lives may be. Today is a reminder to love, to be thankful, to be patient, to breathe deep and savor God’s peace. 


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