On This Road

There's no way to describe the way you feel when the doctor tells you, "We see something wrong," while looking at an ultrasound. Your heart drops. You grasp your husband's hand, you stare at the grainy images they're showing you, trying to make sense of light and shadows. When those words "We see something wrong" includes the word brain, it gets really scary. A big long name for a condition we had never heard of. Hydrocephalus. Prognosis is typcially good. You cling to the word typically but live in fear of the atypical. Of the outliers. Of the ones who don't have a good prognosis. You vow to help him fight, to help him live the best life he can.

The day he's born. You barely see him before he's whisked off to be cared for by someone else. Your child being placed into someone else's arms. Someone else leaning in close and providing warmth. You're laying in a cold operating room with no answers. Your heart pounding, the worst case scenarios running through your head. Asking the doctors for answers and being told they have none yet. You'll get them they promise but not right now.

Standing in the NICU next to his bassinet and hearing "Not swallowing the way he's supposed to. Swallow reflex not working. Probably some damage to his brain. Hydrocephalus." Suddenly your vision of your future, and his, comes crashing down around you. The future you've always envisioned is raising happy children that leave and live lives with their own families, their own careers. Brain damage may change that future. Certainly you'll love him with everything you have forever, but that future may include him by your side for the rest of it. And what to do when your future ends but his keeps going? What happens then? Your resolve to fight slips a little. It's a scary time to hope, but what choice do you have? You start therapies. You agree to another surgery. You do everything the doctors and nurses tell you because it will help.

It's terrifying to go through. It breaks your heart because all you want is for your child to be happy. All you want your child to know is love and joy. And while you know that's not possible for his whole life, you'd really like to think it is possible in the first three weeks. And you feel guilty that your child has to know pain. And fear. And be poked and prodded. And x-rayed. And have ultrasounds. And have a PICC line placed. And you know that all of this is to help him. But he doesn't know that. He has no clue.

Then one day he does this.

And two days later he does this.

And you compare this.

And you start to feel sparks of true hope. And you start to allow yourself to consider that word typically again. Typically good prognosis. And you realize that what they told you in the NICU, "Nicholas hasn't written his story yet. He's writing it every day. There is nothing set in stone." is being proven to you by leaps and bounds. By a baby who doesn't know any better than to fight. And your resolve to help him fight that you thought you had lost? You realize it has been there the whole time and has become so ingrained that you don't have to think about it anymore. And you realize that nobody's future has been written yet and it is never never wrong to cling to hope.