Writing a New Story

When you first learn that you are going to have a baby, you instantly start dreaming of the hopes and promises of your child’s life. Maybe you’ll have a boy and he’ll play soccer, or you’ll have a girl and she’ll grow up to be a ballerina. Someday, your child will get married and have kids. She’ll get a good job and maybe even become president. But then, at some time in your child’s life you learn he has special needs. Maybe it happens right after she is born, or maybe it is two years or twelve years or even twenty-two years down the road. No matter when it happens, those hopeful dreams seem to blow apart instantly.
With this heartbreaking news will come many emotions. You may feel denial, sadness, anger, alienation, fear, helplessness, confusion, and many other things, and you may feel all of these things at once. These are all normal feelings that parents go through when they have been given the news that their child has a special need. It’s important to feel and process that overwhelming grief and despair, and at times it can be so painful that it feels like it is consuming you and your life. Realizing that these states of grief you experience do serve a purpose in coping and building resilience. It is important to know that you are not alone and there may be effective ways to get you through the rough patches, which may include talking to another parent who just “gets” it or talking with your own healthcare provider for some medical advice, interventions and treatment if needed.
As a mom, I am all too familiar with these feelings. My son contracted spinal meningitis while he was in the hospital as a baby. Meningitis is a serious or a severe infection caused by a brain inflammation of the membrane covering both the spinal cord and brain. When my husband and I asked what that meant, the doctor told us my son could experience long-term effects, including Cerebral Palsy, developmental delay, cognitive disabilities or even death. We instantly began to wonder if our son would ever grow up or be married and have kids of his own. Would he graduate from high school? Our dreams were suddenly thrown into question.
In the next year, I experienced many complicated feelings. Instead of doing the things you normally do with a baby, we were busy with multiple doctor appointments every week, therapies, and the intense questions about what would happen in the future. After what seemed like a grueling year my husband and I were finally told that our son did, in fact, have Cerebral Palsy. Through everything, I think the hardest thing was the not knowing. Once our son was diagnosed, we knew what we were facing and we could deal with it head on.
Although it was good to know what we were facing, I looked back to when I was pregnant and how I read all the books about pregnancy and newborn care. Nothing that I had faced up to this point, and nothing I was about to face, had been discussed in any of those books. I was writing a new book, a different book full of different things to expect. I had blank pages and didn’t know how the story would go. So, with these new experiences we started writing our own story, and filling those blank pages….
After those first couple of years, I began to get a handle on my emotions. My family was handling our “new” life more gracefully, and we realized that this new book was not what we expected at all, and that was okay. We also realized that there were some things that are far more exciting than the book we thought we were going into.
In having a child with special needs, I realized that he does not always hit the typically expected milestones, and this made every little thing my son accomplish, that much more exciting. I had assumed that every child would automatically know how to suck on a bottle, or that a child would learn to talk and walk at the right age. Instead, I learned how to thread a feeding tube down my son's throat to feed him, and took him to an endless string of speech therapists. But when my son sucked that first ounce from a bottle, I jumped up and down, and maybe even cried tears of pure pride. It was a feat as exciting as seeing my child become president!
Our book is still in the first few chapters. We continually write a little more every day and hope to have years and years of chapters ahead of us. It started out rough, but now, if I could go back and give myself some advice it would be this – have a positive attitude and know that your child is still your child first before any diagnosis or special need and they can and will accomplish amazing things, even if they are different things than planned! You might not feel this way today, but there may come a time that you’ll see all of the positive things about your child, and see the many blessings or gifts that a child with special needs brings to a family. If I had the option today to change my son, my personal answer would be, no thank you. He is the person he is today partly due to his special needs. He is able to touch people that no one else can because of where he is in his life. He teaches me every day to look at the bright side of things.
I am excited for the rest of our story. I want you to know that your story can and will be great, too.


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Authors & Reviewers

Initial publication: July 2014; last update/revision: December 2020
Current Authors and Reviewers:
Authors: Shena McAuliffe, MFA
Tina Persels
Reviewer: Gina Pola-Money