An Open Letter to Hydrocephalus

I follow a page on Facebook called The Mighty. It's a haven for special needs parents to vent or cry or share success. This page publishes blog postings from special needs parents all over, and I was turned onto it after a friend of mine had her blog posting published. She shared the page and I followed. (You can find Laurie's blog about her amazing daughter here).

The Mighty has challenged it's readers to write an open letter to the disease, disability, condition, or disorder that afflicts the reader or the reader's child (family member, friend, etc.). I have been reading along all month and have finally decided to give it a go.

Dear Hydrocephalus,

I didn't know you before you crept into our lives. You are one of the most common congenital conditions but you are not well publicized. When the doctor said our son had hydrocephalus, we had to turn to Google to even figure out what that meant.

You stole happy moments from our miracle pregnancy. Because I was already high risk, I got more ultrasounds than I probably truly needed, but every ultrasound turned to worry as we watched you take over the ventricles in our son's brain. Every ultrasound his ventricles were larger than the last and every time we left the doctor's office we contemplated how much damage was being done to his precious brain.

You stole bonding time from us when Nicholas was born. He was taken immediately from me after delivery - I didn't even get to touch him before he was whisked away because the size of his head upon birth was so troubling. You gave him a head the size of a one year old when he was born - and he was a month early. We didn't get to hold him for a full week after he was born because of you. Because you required brain surgery during his second day of life and because his veins were too tiny for a standard PICC line, an umbilical artery was placed and it was dangerous for us to hold him lest they lose that line. You stole more bonding by creating an issue where he can't swallow properly and aspirates his food. This required a second surgery and a longer NICU stay.

You have stolen time from our family, requiring therapy and multiple doctor appointments weekly. You have stolen time by requiring Nicholas to feed by tube, a process that takes longer than if we just gave him a bottle or if he could breastfeed.

But you have given back to us as well. You have shown both Mike and I that we are stronger than we ever believed we could be. You have shown us that we have raised, thus far, a remarkable older brother who loves his hydrocephalus/tubie brother more than words can say. You have shown us that the world is full of amazing and kind people who say prayers for us in our darkest hours, who are ready, willing, and able to step to the plate to help us.

And you showed us the most important thing of all. You showed us an indescribably brave little fighter. He fought to get here (twins with only one good follicle that month???) and he is fighting every day for everything. He's graduated to a lower level of occupational therapy because he is meeting his age appropriate milestones. He's not passed his swallow study yet but has shown so much improvement that we think he may pass soon. He is silly and sweet and cuddly. Everyone who meets him falls instantly in love. He's a fantastic addition to this Earth, and hydrocephalus, you can never take that away.

From,
A hydrocephalus/tubie mom