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.”
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.
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