Originally, when I sat down to write this post, I had planned to offer another excuse for why I’d been absent from blog-land for so long. I was all set to tell you about how I’ve made an effort to rekindle my relationship with Art, and that when I started to learn Adobe Illustrator, I became slightly obsessed with it and did it non-stop…ultimately neglecting my blog. I would tell you all about how much I loved drawing as a kid, but I gave it up because I didn’t feel I was good enough. This post was supposed to be about how I’d finally realized it doesn’t matter if its good enough, and I would even show you one of my first digital drawings as if to say “See! This is what I’ve been doing…I got a little bit obsessed with learning illustrator, and that’s all”. When I started to write an explanation of the picture I had drawn, I noticed the theme of the story kind of shifted away from my newly found obsession with Illustrator, to the subject of the picture.
I had a birthday last week for which I received an awesome wacom tablet for drawing and graphic design. I was so excited about it! I needed to learn how to use it, so I decided to use some photos for artistic inspiration. Here is one of the first things I did with my new device:
This is a sketch from a photo of my sister-in-law, Amy, and my nephew, Adam shortly after he was born. I wish I could say that I drew this completely free hand in 2-3 minutes while they were sitting there…or better yet, miraculously produced it off the top of my head, but I cheated. I used a photo.
There was something so touching and moving about this photo that compelled me to use it. There is so much love in it. It was taken just after Adam was removed from his breathing machine, and he wasn’t expected to make it.
Amy had had a normal full-term pregnancy. We were all really excited about Adam, because she and my brother already have two super-cute, amazing kids. I love being an Aunt. I don’t have any kids of my own, so I get super excited about them producing baby cuteness.
When the time came for Adam to be born, there were some complications and he was born via emergency C-section. He wasn’t breathing and had to be intubated right away. His head was also a bit larger than normal, but that was probably okay. It was likely just a bit of hydrocephalus…fluid in the brain, and that is treatable with a shunt (insert the comic relief of poking fun at Uncle Dave’s larger than average head…the dude is really smart).
A closer examination revealed, however, that Adam didn’t have just a little bit of fluid in his brain. He had a condition called hydranencecphaly. He had so much fluid in his brain, that he essentially didn’t have a brain. Well, he had a brain stem, but the space that would normally be occupied by his cortex was completely filled with fluid. He had almost no cortical tissue, and it had somehow gone undetected during Amy’s pregnancy.
From my understanding of his diagnosis, he was not expected to live without the aid of a machine, and even with it, he wouldn’t make it very long without a cortex. This news was a shock to my brother and Amy, and so sad. There was absolutely nothing they could do. The whole situation was heart wrenching and mind boggling.
So, preparations were made. My brother and Amy contacted their families, and made arrangements to have Adam baptized in the hospital before he was taken off the machines. We all came from various parts of the country to witness Adam’s baptism and to support Christopher (my brother) and Amy.
After the service, Adam was extubated as Amy held him. We all stayed for this. Almost 20 of us clumsily draped in NICU hospital gowns surrounded Adam and Amy as he was freed from the tubes. I don’t remember with 100% certainty, but I think it was right around that time that the photo I used for this drawing was taken. As Amy was holding Adam for the first time without tubes, my 4 year old niece spontaneously started to sing”Twinkle Twinkle Little Star” to him. She is a very loving child. Soon after, everyone joined her, and this spontaneous, choked-up, probably off-key chorus of “Twinkle Twinkle Little Star” echoed throughout the NICU. This turned out to be a serious challenge for my efforts to remain tear-free. I cried. And I couldn’t seem to stop crying. As I looked around, I noticed that everyone else was crying, too. Everyone but Amy. She just held Adam and comforted him with more love than I have ever seen in my life. She held him to comfort him as he died. Just thinking about that still makes me cry.
As it turns out, Adam did not pass away that day. He held his own for almost a month…eating and breathing like a normal newborn. They were even able to bring him home from the hospital and they celebrated Christmas with him. And, when Adam did pass away, he passed away at home, surrounded by a family who loved him.
After Adam passed away, I wanted to write something about it for some reason, but I didn’t know what to write or how to write it. I was worried about so many things. What if I say something wrong? Would it offend anyone? Is it my place to write about this? Do I even have a right to feel sad? I couldn’t figure out how to get my thoughts and feelings about it straight. So, I downed a couple of spirited beverages and wrote a post about the Thinker -too-mucher thing that lives in my AMYgdala, instead.
When I noticed this post was turning out to be more of a story about Amy and Adam, than it was about my drawing, I called Amy and asked her if she would mind me posting it. She graciously gave me her blessing to post it, but I still feel a little nervous. What if it is just too much? Am I infringing on their privacy? Their grief? I am fairly certain I did not describe the medical machinery accurately. I’m pretty sure I spelled “EXTUBATE” wrong. I’m not very good at dealing with, or writing about sad events, and I KNOW there are grammatical errors scattered throughout this entire post. But, as I write this, I am just now wondering how much those things matter? Writing is funny that way. It seems to magically bring things to light. Imperfection didn’t stop Adam’s family from loving him, or from giving his life meaning. And that puts so many things in perspective.