You Are My Love

 

You are my sunshine, my only sunshine

You make me happy when skies are grey

You never know, dear, how much I love you

Please don’t take my sunshine away

It’s February 27, 2015. We’re on the third day of hospitalization for my 2.5 year old son, Matteo, and I keep hearing that song in my head. He’s recovering from vomiting that led to his aspiration. A good chunk of his vomit had filled his lungs, leading to pneumonia. Why would vomiting lead to hospitalization? He has Pompe, a rare disease with a fancy name that just means his body can’t break down glycogen, simple sugars, like you and I can. The sugars end up staying in his muscles and acting like cement. The disease affects all of his muscles, his arms, legs, heart and even diaphragm. He can’t cough as easily as you and I, which is why vomiting for him means hospitalization.

The other night, dear, as I lay sleeping I dreamt I held you in my arms

He’s doing better now. Mom and Nanna were with him two nights in a row and I was with him last night. I’d spent the night in moments of rest and wakefulness. When I was awake, I’d created a spreadsheet, keeping track of all of his vitals. We were hopeful. Everything pointed to a recovery that could mean taking out the ventilator today. He’d be able to breathe on his own again and talk. We can hold him again and play.

The time came when his doctor came in and said we had the green light to remove his tube. Mom was back at the hospital by this time. We couldn’t wait.

When I awoke, dear, I was mistaken

So I hung my head, and I cried

The tube came out alright, but he couldn't breathe on his own. Everything I’d read, all that I’d heard, made me think he should've been able to, but no. It wasn’t to be. His face was ashen and needed oxygen. He wasn't strong enough. His diaphragm...just...wasn't...able! He had to be placed back on the ventilator. My mind was reeling. Mom was off to the side. From what I read on her face, she was thinking what I was, "what does this mean? Why aren't they moving fast enough? what are they waiting for? Does it mean we're here again for another month like his first big episode two years ago?" The nurses and doctors walked in. There must have been 10 people in that room, holding various tubes, lubricants, readying the ventilator and some providing oversight. They asked me if I preferred to wait outside. "No!" I couldn't leave. How could I? Many people get queasy or faint when they see their blood drawn. I look at the needle every time for the same reason I couldn't tear away from that moment: it was a part of me that was going through that pain. I had to see it, own it, and be in it nose deep. Sure, Matteo’s not my blood, but I wanted to own every moment of his pain, troubles, anguish and discomfort as my own so that I was motivated to find a way for him to someday again soon experience the happiness, laughter, and joy of playing outside with other kids and his sister. Someday! And I wanted that to be yesterday. Once it was done, he was passed out, probably because of the sedative he was given to ease the pain.

By the time the doctors and nurses left, I wasn't impressed with the staff's deft touch, nor with how organized they were. I was only focused on him and how fragile he was. I was focused on how I wanted my boy back; how much I wanted my sunshine again.

Please don’t take my sunshine away

You are my sunshine, my only sunshine

You make me happy when skies are grey

You never know, dear, how much I love you

It took all of us time, but we eventually realized we couldn’t rush his recovery. His body had to be ready. He had to be ready. It didn’t matter what I wanted and how much I wished to shorten his time in the hospital. It wasn’t up to me. I had to be patient.

The three days stretched to three and a half weeks, but Matteo eventually came off of the ventilator and recovered. The years that have followed have meant fewer visits to the hospital as he’s become stronger. The doctors are still searching for a cure for Pompe, and we’re hopeful, patiently waiting.

His numerous incidents in the first three years of his life, the many hospital stays and his fight every time, made me accept his pain as my own and stop being aggressive, stop pushing him and the doctors to a conclusion that I wanted in the timeframe that I wanted. I realized that whether it’s his trials, another family member’s or friend’s, or my own, progress and success requires patience. Looking at stats and numbers are not enough. The whole matters more than any one stat, thought or feeling.

You are my sunshine, my only sunshine

You make me happy when skies are grey

You never know, dear, how much I love you

Please don’t take my sunshine away