Friday, February 27, 2015

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

I've always loved this song and saw it for a love the author had for another, but saw out of his reach. It has such an earthy lyricism and quality to it. In the last year, as I've begun to learn to play the harmonica, this is one of the songs I gravitated towards. It has such beautiful melody and the harmonica, with its simple, earthy tones seemed such a natural fit for it.

In the past few days, it's come to mean something entirely different for me. You see, for many years my wife and I'd held firm that we weren't going to have any kids...and we haven't. However, given we live with one of our best friends, my wife's graduate schoolmate, and that she had twins a little over 2.5 years ago, our past wants...well...melted away, albeit slowly.

In the two and a half years since Teo and Val were born, I've come to love them dearly. Teo especially showed a connection with me. He always wanted my attention, even when I didn't realize it. As you might guess, Mom always reminded me. And I've given him more, noticed him more, and been more impressed by him every day.

You are my sunshine, my only sunshine

Many nights I dreamt of him, seeing him do new things. Why? Well, because I wanted to see him do the things that all kids do at his age: giggle, play, crawl, learn to walk, soccer with his Tio. 

You see, all other kids do these things at his age, but he can't. He has a genetic disease, named Pompe. It's a fancy name, but it means he can't break down glycogen, what all of our muscles do every day: use glycogen for energy. Instead, his body stores it and acts almost like cement, preventing him from moving his muscles.

You make me happy when skies are grey

Once we had confirmed he had the disease during his 8th month of birth, Teo's mom worked hard to get him on various therapy regimens and, most importantly, on a newly-made-available treatment. We felt the feelings that overtook us. The skies were grey in our lives for a number of weeks and months, especially since he caught the Flu and was hospitalized for almost 6 weeks since he had, as a result of Pompe, developed an enlarged heart and couldn't cope with so much stress on his body.

You never know, dear, how much I love you

I never thought I could love a child as I did then and, more so, as I feel every day I see with him...feed to him...kiss him good night. He's a boy full of unique traits, as you'd expect in every child. He's a jokster who pretends he doesn't know many things when he does, testing whether I know the answer to my own questions. "And what comes after 18?" He gives me a quizzical look and I say, "Are you messing with me?" as he utters, "nihh-een (nineteen)".  

With the Enzyme Replacement Therapy he's been receiving for the past 20 months, he can move his arms again, though slowly. So, I love seeing him smile as he plays and waves his arms around, or uses sign language for "Milk, please". By the age of two, he'd learned his alphabet, knew how to write his name, his sister's name and his mom's name. He knows how to count to 30...and he loves vanilla ice cream.

Please don't take my sunshine away

So it has been for some time. We have had some issues, including a couple of emergency ambulance rides to the hospital when he passed out and we had to administer CPR due to his inability to breath, caused by mucus build up from his cold in his throat.  

But overall, we've been very lucky and happy. I've come to refer to him as "my boy" and "my son" when someone asks me if I have any kids or how the kids are doing.  

Then came his episode this last Wednesday. I got a call at mid morning. I was in the middle of a conference call on my cell and the call was coming in on the home phone. It was Mom, "I know you're on a call for work...Matteo threw up and may have aspirated. We're at Children's Hospital." 

I was stunned. I thought, "Threw up? He has thrown up in the past. What made it so bad this time?" I immediately responded, "I'm on my way."  

"Come quickly," Mom said.

I hung up, unmuted my cell and interrupted the conversation, "My son's at the hospital. I'm sorry," I was beginning to stammer now, "I't stay. I'll with you later this week." 

I felt my sunshine fading away. I had to move.  

I called my wife and asked if she'd heard from Mom. "No, what's going on?" she asked. I briefed her and told her I was on my way to the hospital. I shutdown my computer and took it. I knew I may need access to the web to do any necessary research at the hospital. I also knew Val was with Mom . I took an extra tablet to insure we had something to keep her entertained and distracted. I let the dogs out...then back in and crated them. That's it. I had to go.

I had so many thoughts going through my head during the ride to the hospital. And I noticed I was speaking out loud in the car, with hands shaking. It was the first time I'd felt this way during one of his incidents.

The trip to the ER and back with Val felt like it took minutes, even though it was in the span of about 5 hours. Val was crying and asking for mom the whole time,except when she fell asleep in the car...too exhausted, perhaps.

By evening I heard from my wife and Mom. Teo was stable and in Pediatrics ICU...PICU. I felt a bit relieved, though exhausted. My wife would eventually come home, get some supplies, clothes, phone and tablet chargers, among other things and head back to spend the night with Mom and Teo.

I, too, needed company that night. I took refuge on the couch, sleeping with our dogs.

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

It was a night filled with dreams and wakeful times. I didn't remember much of my dreams, but when I awoke, my only thought then and throughout the day was the chance to see Teo that night when I went to the hospital. You see, I was "scheduled" by Mom to take the night shift...and I couldn't wait. I was excited to see my boy. I received multiple updates throughout the day. Teo was doing better, though he was still tired and recovering.

I headed to the hospital that afternoon, and introduced myself as "dad" at the reception. Why? I could hide behind the hospital's rules that only parents were allowed in PICU, given the flu season. But that wasn't the real reason. The truth is, for the one of many times over the last few (weeks? months? years?) what I said was how I felt about my boy. He was, is, and will always be my boy!

I had to spend the next two-plus hours convincing Mom to go home, even though she was already supposed to and knew she had to get some rest. The night before was rough as she slept in fetal position next to Teo.  

In the end, she did.  

For the rest of the night, I read through all the notes the girls had kept in Google Docs and created a spreadsheet to see any trending of his core data they'd collected: CO2 levels from machine readings, CO2 from his blood tests, his O2 saturation, ventilation O2 and pressure settings, among others. When I couldn't keep my eyes open any longer, I went to sleep.

Throughout the night, I awoke a few times when the nurse or the Respiratory Therapist would check on him. One of the times, at about 2 AM, he was being fussy and I kept him company until he calmed and fell asleep again...all the while recording more data and searching for signs that he was recovering.

When morning came and the doctors started their rounds, I was hopeful. His latest blood results showed very promising and low CO2 results.  His chest x-rays also showed his lungs were almost completely clear. He was mostly breathing on his own with no Ventilator support except for an O2 supply. I was very excited. This was likely the day they would remove his tube and ventilator.  

Why was that important?

Well, by coming off of the ventilator and being able to breathe again on his own, we could look forward to just another couple of days of monitoring his progress at the hospital, then going home on Monday. Back to playing games at the breakfast table...or giving me high fives after he finished solving picture puzzles. Seriously, how many two and a half year olds do you know who can solve picture puzzles designed for 4+ year olds? Seriously! Come on, now!

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 were excited. With his ventilator tube, we couldn't hold him, but with it now coming off, we could hold him, play with him, interact with him.  

I called my wife and told her of the big news. I couldn't wait.

When I awoke, dear, I was mistaken
So I hung my head, and I cried

And then we saw the results: He couldn't breathe on his own. With all the given positive data, he should've been able to, but it wasn't to be. His face was ashen and needed oxygen. He wasn't strong enough...more specifically, his diaphragm wasn't able to bring in enough oxygen past his mucus build up. So, he had to be placed back on the tube...

My mind was roiling at that point. 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?"

They asked me if I preferred to wait outside.


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 in it nose deep. Sure, Teo's not my blood, but i see and want to own every moment of his pain, troubles, anguish and discomfort so that I'm 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 want that to be yesterday!


Once it was done, he was passed out. After all, he was given a sedative to ease the pain and allow him to heal. So, he was in la-la land.  

When they were done, I wasn't impressed with the staff's deft touch (they were, indeed, swift and accurate), nor with how organized they were (and they sure were). I was only focused on him and how fragile he I wanted my boy much I wanted my sunshine again.

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