Day 11: So, ummm…you’re awfully cute when that neuron misfires like that…

This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock…

*********************

Something that I didn’t understand when I was first laid eyes on him, and will never be able to explain is how cute Arthur was physically.  I know I dwell a lot on Arthur’s appearance, but I just can’t get over how shocked I was at how adorable I found him to be.  The physicians and social workers who met with us before his birth really tried to drive home the idea that it didn’t matter what he looked like, we would think he was beautiful because he was ours.  Really it was just a nice way to tell us that our son had a face that only a mother could love.  From what I have seen, kids with HPE tend to have a certain “look” and there are about 4 “types” of look.  Every time I stumble upon one of these kids, I instantly see beauty, so I’m pretty sure it’s not a face that only a mother could love.  Total strangers will look at Arthur’s picture on my office desk and go on and on about how cute he was, sometimes not looking away from the picture at all during their time with me.  I feel that these children have the gift of cuteness so we, as adults, will not be afraid of them or pity them, but be drawn to them.

Arthur was a very quiet baby.  I don’t believe he ever actually cried, he made noises when he was in need, but it was never a full-on cry.  After suffering through three months of colic from Marena when she was a newborn, this was really a treat.  I knew that people who are dying go through a “conservation mode” physically and nonessential functions start to shut down.  With Arthur, he conserved energy by not crying.  This energy conservation is also a gift to a parent who is stressed out, undernourished, sleep deprived, depressed. The only thing worse than having a sick baby to take care of is to have a baby who is sick and crying.  No matter how bad I was feeling, he would always raise my spirits by his peaceful nature.  This is not to say that Arthur was completely mute, however.  He babbled a lot.  There was this funny little misfire of neurons that went on with him that, on paper, seem like they would be very disturbing, but in reality this behavior was so cute and quirky that it didn’t scare me at all.  He would spend most of his waking hours with one arm extended over his head and the hand fisted.  He would then simultaneously make a noise that was somewhere between a quack and a cluck and open and close his fist to the rhythm of his voice.  When we would put him down for sleep, he would spend hours making that little noise and when I would look over at the bassinet in the dark, I would see the silhouette of his little hand opening and closing.  He began to do this less and less as his life grew closer to the end.  I will always remember and miss the sound of that little voice quacking away all night long.

I have had some people comment to me about how scary the time Arthur was up all night with seizures must have been for me.  Even though a seizure is a scary occurrence, babies look so much different when they have them than adults do.  I didn’t even know he was having them regularly until the first nurse from Hospice was at our house doing our intake and he had one right in front of her and she pointed it out to me.  For anyone who has never seen a baby have a seizure, it’s usually just a jerky set of movements that are centered around the mid-line of the body.  Arthur looked like he was playing air drums when he would have one, he would line up his fists to the center of his body and they would beat up and down somewhat rhythmicly.  Then again, another serious health concern that should be terrifying was expressed in such a cute and seemingly harmless way, I was able to keep my head level and calm him down during and after the seizures.

Something about Arthur didn’t seem real to me, with his pear shaped head, all of that fuzzy hair, and his jerky movements, he appeared more as a cartoon character or puppet than a real live baby.  I feel that Arthur’s super-human looks and mannerisms were more than just a genetic anomaly, they were a gift.  People always try to tell me that God will never give you more than you can handle, but Arthur taught me that this isn’t necessarily true.  God gave me way more than I could handle with Arthur, but He also gave me the tools I needed to get through a terrible situation and come out on the other side a stronger person.  The most essential tools He handed me were Arthur’s suave good looks and actions.