“This is going to hurt me more than it hurts you.”

Did your parents ever say that to you? I remember hearing it once or twice as a kid – when I was being disciplined or in some kind of pain, and thinking “no way”.  Now that I’m a parent, I feel it. Kids are resilient. In many ways, they don’t know how bad the bad is. It’s us adults who have been there and know what it takes to recover and heal from our pains and failures.

 

It’s been a week since Zion was admitted to the ICU for episodes and we are finally home, as of last night. Long story short – Zion may be having seizures or he may be heading for another brain surgery in 4 weeks due to a shunt malfunction. There are a lot of signs pointing to and away from both, and there are a lot of doctors putting their heads together daily on behalf of our son to try and solve the riddle. Last night they sent us home with monitoring equipment for Zion, to make sure we can call 911 if an episode happens in his sleep, completed CPR training, anti-epileptic meds that make him just a tad insane, and an emergency plan for what to do the next time one of these happens.

 

I am thankful to be home, but home feels different now. Knowing that another episode could happen at any moment keeps my shoulders in a constant posture of not quite letting down. I’ve spent so many hours this past week overthinking his symptoms in my head that my brain now feels like an overly-flipped pancake… not able to just sit and cook on one subject. This past week, I have done my fair share of holding him like it’s my last time, obsessing, crying, worrying in the middle of the night as I stare up at his monitors, and praying. But then I looked at my son towards the second half of this week, watched him with the hospital staff, and realized he was loving life almost as much as he does at home. He doesn’t like the part of the hospital stay where he gets poked with needles or the moments when he is frightened and in pain but otherwise, he’s a pretty happy kid.

 

Yesterday one of his rockstar neurologists asked him, “are you ready to go home or do you want to stay here?” He told her he wanted to stay at the hospital. He told me he likes his hospital and he loves his doctor friends. As soon as he said it, I remembered something really unique about my third child – The children’s hospital was his first home and living with persistent medical issues is all he has ever known. He is growing up from the ground zero of familiarity with pain, struggle, monitors, medical staff in bright colored scrubs, cable TV, vanilla milkshakes, blood draws, MRI’s and CT scans, and all the rest of it. In Zion’s experience, ignorance is bliss. This is his life and most of the time he has very few complaints.

 

I know a different life. I remember what it was like to be a healthy, happy kid, taking it all for granted, my worst pain being boredom while I watched my mud pies dry in the sun. I know what it’s like to raise two other healthy boys whose biggest medical hurdles are a low-grade fever once a year. Over the past five years I have been growing toward the responsibility I have as Zion’s parent .. towards the diagnosis he was born with and every new one they discover. I’ve grown towards words like congenital hydrocephalus, grade IV intraventricular hemorrhage, intracranial pressure, ventriculoperitoneal shunt placement / revision, cerebral palsy, hemodynamically stabilizing, bradycardia, tachycardia, and countless more. I’ve grown toward the pain of frequenting a children’s hospital and the measures we all take to make Zion want to come back because we know that, for kids like him, they always have to.

 

So I spent a good part of the week crying, worrying, praying, and asking a million questions every chance I got. Then I looked over at him to see a little boy living what he experiences as a perfectly normal, wonderful life .. giggling while riding the tricycle around the hospital hallways or making a craft with one of the volunteers or holding a dog on his lap on “pat pals” night or helping his care assistant change his pulse oximeter probe or asking his nurse her favorite color while she gets him ready for sedation for the next MRI. That’s when I realize it’s true –

“This is going to hurt me more than it hurts you.”

 

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Tara I just love youJune 16, 2016 – 5:13 pm

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