Health Kids

Finding Hope in a Devastating Diagnosis

Finding Hope in a Devastating Diagnosis www.herviewfromhome.com
Written by Kathy McClelland

In the summer of 2013 my husband and I sat anxiously across the table from a geneticist in a sterile NICU conference room. I don’t know what I was expecting exactly because we were pretty sure we knew our son’s diagnosis. We had the results of an initial blood test and my husband who is a physician assistant, already suspected our son had Cri du chat syndrome based off his cry and physical characteristics.

The geneticist’s first words to us were, “Congratulations Dad, you correctly diagnosed your son.”

It hardly felt like congratulations. She went on to say that he may never walk, talk, or be able to live independently. She told me I would probably need in-home nursing care in order to take a shower, curl my hair, or paint my nails. I rarely do the latter two and I’m not sure why she felt the need to say those things. She didn’t know me. She painted a very bleak picture for what life would be like for our then two-week old son. I felt unknown, angry, and hopeless after I left that conference room. It was definitely my darkest day. We received a lot of information, but very little hope.

Four years later, our son is doing some things we didn’t expect him to do. He is signing many words and even has some word approximations. He is walking with the help of a walker and can pull himself up onto the couch to sit next to brother when he’s watching TV. He makes great eye contact, is super friendly, and cuddly. Other things we are still patiently (or not so patiently) waiting for, like his ability to eat by mouth instead of with a feeding tube.

The Gift of Low Expectations
When I think back on that day with the geneticist, I don’t feel as angry as I did then. I’ve been in a process of forgiving and healing. Hers is not an easy job of delivering bad news to parents. While the delivery of my son’s medical diagnosis is not how I hoped. It did offer a gift to me. It was the gift of low expectations. Expectations that my son is exceeding. And I don’t just mean in the physical things he is doing, but in who he is. There is a very special boy entangled in this disability. And that is something she could have never explained to me at the outset.

Nathan is a boy who will stare deeply into your eyes, cuddle you, and giggle contiguously. A boy who will click at you with his tongue or grunt like a bear to get your attention. He is a boy who gets feisty when he wants to do something on his own or explore this world we all share, albeit in different ways.

His disability is giving me a new perspective on this world. The way I live in it, is driven by my schedule and by anticipating what will be the next need, the next idea to implement. His way of living in this world, is to be fully in a moment. He can slow even me down to real-time the way no one or no other thing can:

To stop what I’m doing.

To be present with him.

To look into his eyes and smile.

To interact regardless of whether I get something in return from him.

To pay attention.

To know what is happening now rather than strategizing and preparing for what is to come.

Low Expectations Lead to a New Way of Living
Nathan makes me think this is not a bad way of living. His way of living requires me to be fully where I am and to love him fully for who he is now, not who I wish him to become. It requires me to trust completely in the provision of God for the future—both mine and his. Nathan is not worried. He trusts. He persists. And he moves forward his way, no matter what others are doing.

Every time Nathan meets a milestone, initiates an activity or a sound, every time he decides to try to imitate his brother, I’m witnessing a gift. By setting my expectations so low, the surprise of any accomplishment is a gift from that geneticist all over again. Because of what she said, every little thing he does seems significant to me. I do not take anything he does for granted. Her low expectations are building my hope, fortifying my resolve, and allowing me to bear witness to God at work right here on earth.

What started out as a devastating diagnosis, has turned into a beautiful expression of living with hope.

About the author

Kathy McClelland

Kathy McClelland is the author of Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent. Her second son was born with a rare (1 in 50,000 births) chromosomal disorder which catapulted her into the world of special needs parenting. A former marketing manager, she now blogs at kathymcclelland.com about finding beauty and hope in the midst of broken dreams. She is also a regular contributor to PreemieBabies101.com and KeyMinistry.org and has published on TODAY.com, TheMighty.com, EllenStumbo.com and Sparkhouse.org.