Remember when you first found out you were pregnant? You rush out and buy a book so you will know what to expect when you are expecting. There is a chapter for the early signs, like morning sickness, heartburn, weight gain.
You get it, right?
Then there are the meatier chapters. The trimesters. The wonderful stages of development. You read it many times as the little life inside you grows. This book becomes a bible for many.
So, where is the rest of the book? The part that teaches you what to do when it doesn’t go as planned? I needed that part of the book desperately after my daughter was born with an incurable illness called Tuberous Sclerosis.
I was so lost. I needed to curl up with this book, maybe in my favorite chair with my feet curled up. I needed words to wash over me like the tears that stained my cheeks. Words to reassure me. To tell me everything was going to be OK.
There was no extra chapter. There was only the happy ending for the expectant mom. Not the mom whose world was rocked to the core. Not the mom who heard the words Tuberous Sclerosis. Not the mom whose baby was now having seizures or was in ICU, or whose arms were now empty.
It is such a desolate feeling. My daughter is now 25, but I remember like it was yesterday.
Memories of those early days, of not knowing what to ask, of being lost in a quagmire of doctors, therapists and medical terminology. Of feeling like my daughter was a specimen as medical students clamored around her hospital crib to look at her hypopigmented lesions (white spots) or to observe her seizure. To poke and prod her like she was a guinea pig.
I was in limbo. I was in hell.
There is no chapter to tell you about the sleepless nights you lay awake tossing and turning from the worry. You heart actually hurts, doesn’t it?
Why isn’t it written that you have this overwhelming urge to scream? To rage against the unfairness that this has happened to your child?
There is no chapter that tells you that this disease does not define this wonderful human being you and your spouse (partner) have created. That will come with the magic of discovery.
You will write your own story and you will have prolific subject matter. You will have chapters on grief, anger, fear, denial, bargaining, depression, and guilt. These will become well-worn chapters that you will read many times in your journey.
You will have chapters on humor, clever anecdotes that only another special needs mom or mom who has a child with a rare disease could relate to. You will have a chapter on the stressful toll it takes on parents when their child is sick. You will have a chapter solely about the ironies in life. You will have a chapter on doctors and therapists. Ones that became like trusted friends, and ones you despise.
You will have the dreaded IEP chapter.
You will have a chapter on how to keep going on when you feel like you can’t. You will have a chapter on how to keep your relationship alive, and how to move forward when it all falls apart. There will be a chapter on pride. A chapter devoted to the swelling in your chest when your child accomplishes even the smallest task.
There will be a chapter on hope. You will have a chapter on friendship devoted to the ones who remained by your side through the struggles, or new friends that have become like family.
There will be a chapter on Epilepsy, Surgeries, Autism, Tumors, behaviors, and all things related to your diagnosis.
There will be a chapter on the importance of reaching out to others, of learning through research, and how to maneuver through the intricate world of the medical field.
There will be a chapter on the benefits of wine consumption and chocolate.
Your book will read like a drama, a mystery, thriller, romance and comedy. Maybe even a little fantasy will be thrown in.
Your book is well-written. This is your story, and it is filled with your truths. It is not often an easy read. Some parts will move you to tears, while others send you in a fit of giggles and you are left shouting YES! You won’t sell your readers short. It is filled with raw honest emotion.
You won’t forget your last chapter. It is called acceptance. It is a chapter that is so deep it holds the reader entirely captivated. It bespeaks unconditional love and the journey to get there.
Maybe for now this book only lives in your head and in your heart. Maybe one day you will put the pen to paper. It is an appendix of the book on pregnancy that should be written by an expert.
I have a catchy title. “What to expect for the unexpected.”