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A Letter of Love to My Son With Hydrocephalus

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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,

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Originally published: March 17, 2017
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