Hopes and Fears of a Father

I am the proud father of two young boys: Patrick, who is 11, and Alex, who is 9. (NOTE: some names have been changed to protect privacy.) Back in April 2009, I wrote a Facebook note entitled Fears of a Father, where I described some of the challenges involved in raising these two boys. It felt like I was long past time to update that.

Patrick has inherited my love of comic books (and related media like the Iron Man movies, The Avengers, Teen Titans Go!, etc.) He and I are traveling together (just the two of us) to Baltimore on Saturday to attend Comic Con. He has started his list of graphic novels and figures he wants to look for, in order to fill in various collections (he wants an entire set of Ultimate Spider-Man). He’s spent the last 3 evenings in my room, reading through everything he can get his hands on that I’ve purchased over the last few months. He very quickly picked up on the fact that some of Dad’s comics are not appropriate for an 11 year old, so he always brings me whatever pile of books he’s about to go through, so I can remove the age-inappropriate issues (such as The Walking Dead). He’s also aware that there are individual as well as sets of graphic novels currently on the bookshelves that he’s not quite old enough for yet, such as Watchmen, Batman: The Long Halloween, and Invincible. Some he’s been told he needs to be at least 13, while there’s other things in the room (like the first two seasons of Game of Thrones Blu Rays) that he’ll be waiting till he’s closer to 17.

This is what my bedroom floor currently looks like thanks to him:

Alex is a full-fledged video game savant. He’s built worlds and structures in Minecraft that I couldn’t imagine having the patience to put together myself, and he’s gone farther in every single Angry Birds game than me (and done it much faster). He’s also become capable of building complex Lego creations using nothing but the picture in his mind. Here’s a small random sample:

Patrick has been suffering from seizures since he was two years old. At its worst, he was having one about every 10-14 days. He was on 7 different medications, each of which would help for a short time, but then the effectiveness would inevitably wear off after anywhere from a month to a year. Finally, after a long series of tests at the Children’s Hospital of Philadelphia (CHOP), the doctors were able to discover that a portion of his right front lobe had simply never formed correctly in the womb, and was now made up of largely dead cells, which were interfering with the electrical signals in his brain. After extensive consultation, and a meeting at CHOP where a roomful of people know more the brain than practically anyone in the world, it was decided to perform a lobectomy: basically, removing the portion of his right frontal lobe that wasn’t properly formed. We were told that it would probably be a piece about the size of a lemon.

After the surgery was over, we found out it actually ended up being about the size of a grapefruit.

The surgery took place at CHOP in June 2012. If you’ve paid close attention to my previous blogs, you’ll realize I was in a state-run 24/7 inpatient drug and alcohol rehab at that time. I had to jump through more hoops than I think any reasonable person would expect, when it concerns his son have major brain surgery. Thankfully, I was able to get out on two different occasions and spend a few days with him. My first arrival was after his skull was opened up, and a “grid” was placed directly on his brain to read whatever activity they could find.

This was the image that greeted me when I walked into the room:

Thankfully, the surgery went off with almost no complications, and Patrick was home a week later. And despite having such a significant portion of his brain removed – talking to him, interacting with him, you couldn’t tell that anything had changed. There have been issues, of course – the right frontal lobe controls many of the “executive” functions of the brain, so Patrick struggles with things like sarcasm, and his emotional swings can be incredibly intense and INSTANT. There is no slow build-up: he goes from 0 to tantrum in a fraction of a second. Also, because of a variety of reasons, his emotional maturity is closer to that of an 8 or 9 year old much of the time. This is something we’re working on with a series of professional. But, Patrick has not had a seizure in over 14 months, and the doctors say the chances of him never having one again are good, and literally get better every day he doesn’t have one.

Now, as for Alex: he’s autistic, and has been in the Delaware Autism Program since he was three. The sentence I wrote about Alex in the Note from April 2009 that haunted me was, “I cannot honestly say that I know for sure if Alex will ever make a single friend in his entire life.”

This is a text we received from Alex’s teacher this afternoon:

“Hi. It’s Sue just wanted to let u know Alex is playing tag with the class at recess!!! From Mrs. Collins”

It’s difficult to describe what it feels like to be told a sentence as simple and common (for almost every kid on the planet) as “Your son is actively playing with other children his age”. But, when you were preparing yourself four years earlier that he could very possibly live “in his own world” for his entire life… the mental image of him chasing and being chased on the playground and the sound of his laughter you hear inside your head when you picture it, is like watching your child win a gold medal at the Olympics. Pride, relief, joy – the actual release of fear that you can feel come out of your chest – it’s nearly overwhelming. I have more than once in the past cursed God for what I felt he did to me and my sons, and how unfair it felt. But I wouldn’t trade the feeling I had this afternoon for anything in the world.


One comment on “Hopes and Fears of a Father

  1. Jeannie says:

    The funny thing is, I was just thinking last night about your story of when one of the boys (I forget which) disappeared from the house. And I was thinking that maybe you should revisit – in this forum – their “now”, and your interactions with them. Thank you!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s