A Note to My Past Self: There Will Be Good Days

If I could go back to my son’s diagnosis, the first one when I was 20 weeks pregnant with him, I would tell myself, “Yes, Xavier will have Hydrocephalus (excess water in his brain), but this will not be all of him. You will have bad days, horrible days, days when you have to trust a surgeon to help him.”

“Then you will have great days. Days when it seems like nothing is wrong with him and days when you have to explain what Hydrocephalus is to people. You will realize that there was so much strength hidden inside of you that God needed a way to show you. You will know complete unconditional love. You will be able to stand with nurses and doctors during rounds and be 100% confident that they will listen to you, his mom. You will know that your path in life will be one that you never realized before.”

allison naveda

Flash forward to when Xavier was 2 years old and we were at his NICU follow up clinic appointment. The doctor told my mom and me that Xavier has dysontic spastic quadriplegic cerebral palsy. If I could go back to this diagnosis, I would tell myself again, “Yes, Xavier has this, but it will never define who he is as a person. This will be another hurdle that he will have to go over, but he was born into the right family. You will have an amazing team of medical doctors and therapists and a family that will never leave your side. This is not your fault, nothing you did caused this; it just happened. You will give him so much love and life that he won’t notice his disability as much. You will know terms, equipment and medications like the back of your hand and you will handle it all with such grace and strength. You will be cheering at 0.5 oz weight gain because for months you have been documenting his food intake. You will cheer when he rolls over on his own and you know it was on purpose and you will cheer when hear his first words. Just because he has this doesn’t mean his life is over. His life is just beginning and it will be amazing.”


For all of January, 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Find this story helpful? Share it with someone you care about.

Related to Cerebral Palsy

I Used to Hate the Beach. Then, My Daughter Came Along and Changed Everything.

I used to hate the beach. I loathed the bright, hot sun that makes my eyes malfunction and my pale skin burn brighter than the reddest lobster after three minutes of exposure. I couldn’t stand the smell of the sea, a smell that can only be described as ten-day-old seaweed covered in iodine and set [...]

Why I Didn’t Cry When My Daughter Was Diagnosed With Autism

I remember the details pretty vividly of when the therapist told my husband and me that our daughter was on the spectrum. It was morning. The office was dark. The couch was uncomfortable in that it was too deep to sit back on and still have my feet on the floor. The therapist held a [...]

Why This Little Interaction With My Son Means So Much to Me

When I heard Dominic running down the stairs and into the family room at 6:30 a.m. this morning, my first thought was, what in the world is he going to do with the two hours before his bus arrives? Would he play with his toys? The i-Pad? Rest on the couch? When I asked Dominic [...]

Why I Can’t Imagine Who My Son Would Be Without Autism

What exactly is autism, anyway? He doesn’t look like there is anything wrong with him. Should we get a second opinion? What if he’s just going through a phase? I’m sure he’ll catch up to the other kids soon. Some kids just talk late. He’s just quirky. I have thought and said all of these things.Sometimes [...]