A Letter of Love to My Son With Hydrocephalus

My Sweet Davey,

At the time I’m writing this letter you are 2 years old. You have endured more in your 2 years than what seems most people do in a lifetime. You have survived seven brain surgeries and a horrible infection called bacterial meningitis. Davey, you are my hero and don’t you ever forget it.

The day I was told you had hydrocephalus you were almost 14 months old. My heart felt like it was breaking, not because I felt there was anything wrong with you, but because I was afraid you would have to endure pain. I would trade places with you in an instant if it meant you could be pain-free. Those aren’t just words for fluff — I mean them with every ounce of my being.

For all the years I live, I don’t think I’ll ever forget the day we almost lost you. It brings me to tears even now, almost a year later. Davey, I want you to know I will do everything in my power to make sure that never happens again. I will never allow another doctor or surgeon to ignore my concerns when I know something is wrong. I am so, so sorry.

You, my precious son, are nothing short of my superhero. You have fought and fought and continue to fight every day. Because of you, I’ve learned the meaning of true perseverance and true strength. To me, you are the embodiment of what it means to be a hero. I hope you always remember that.

Last, but certainly not least, I want you to know you will never ever have to walk this road alone. I am walking beside you, and I am honored to do so. I will advocate for you every step of the way. I will laugh with you and I will cry with you. You will leave my arms to go into the hands of the most capable neurosurgeon there is, and my heart with break every single time. There may be times you doubt the fairness of this diagnosis, and you can be frustrated with the lack of treatment options, or you can yell and scream and cry if you need to — but never, ever doubt my love for you.

All my love,

We want to hear your story. Become a Mighty contributor here.

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

Related to Hydrocephalus

What I Wish I Could’ve Told My Parents When I Was Diagnosed With Hydrocephalus

I was born with congenital hydrocephalus, and had a shunt put in when I was less than 2 months old. I grew up with this condition being hidden from me, only uncovering parts of the puzzle over time as I grew up. At the point of diagnosis and intervention, I could not have spoken up [...]
Close-up of two businesswoman around the table during job interview

Why I Declared My Hydrocephalus at a Job Interview

I recently applied for a teaching aide position at a school for special education. The process was relatively smooth-sailing, since I had a friend who was working there – not only was she my character reference but also my middleman in making enquiries about the school, job scope and application process. The decision to enter [...]
The author and her Mom.

6 Things I Wish I Could Have Told My Mom the Day I Was Born With Hydrocephalus and Goldenhar Syndrome

Monday, April 2, 1973 Dear Mom, It’s only been a few hours after my birth. I know you are tired in a wakeful sort of way after over 12 hours of labor. The doctors “didn’t know” my skull would be so swollen with fluid because of hydrocephalus. You knew from your mother’s instinct listening to [...]
Tillery with her gait trainer.

The Day I Took My Daughter Out With Her Braces and Gait Trainer

Alana’s daughter, Tillery. We’ve tended to keep our physical therapy at home. The leg braces and gait trainer that assist my daughter in standing and walking are usually replaced with cute pink princess shoes for “going out.” Recently, as she’s started doing more standing and walking, the equipment has left our home and started traveling [...]