I was thinking yesterday about perspective & experience vs. fear & anxiety. Kind of in a jumbled, mixed & mired sort of way. I follow a blog by Robert Rummel-Hudson, who wrote a book called "Schuyler's Monster." His daughter has polymicrogyria, which is what Mason has. It is a type of brain damage that is not very common. The only difference between Schuyler and Mason is where the damage has occurred in the brain. I believe Schuyler's is perisylvian polymicrogyria, and Mason's is biparietal polymicrogyria. Schuyler is currently being watched for the beginning of seizures, which our neurologist told us would happen in Mason, it was just a question of when they would start. I had a very dear friend over last week, whose daughter has been having seizures for most of her 11 years of age. Also, there is my nephew, who had spinal meningitis when he was a baby, and almost died. A dear friend of ours, who fell following surgery and is now facing the loss of his vision. My husband's aunt, who had surgery for a brain tumor. A friend of ours, who is our age, who fell while she was walking and just finished surgery for a brain tumor. My grandma, who has ring melanoma in her eye and colon cancer. The list could go on and on.
I think it's safe to say we all have stories of family or friends who have faced unexpected medical issues. I myself had seizures at about one year of age, and was on phenobarbital for a year. One of my seizures was fever-based, one was not. Following the fever-based one, (also known as "febrile" seizures) I was packed in ice at the hospital. My mom said that every time I was sick after that, she watched me like a hawk. She said she looked for something in my eyes that would tip her off I was going to be Really Sick. My sister and her husband always worried when my nephew was sick after his bout with spinal meningitis. My friend worries constantly about her daughter's seizures. Schuyler's family is mega-concerned whether she is exhibiting abscence seizures or not. Our friend is fearful he may lose his eyesight. My grandma is nervous about coping with the loss of her eye.
My sister, Kelly, calls her fears "Kelly World." We laugh about that, but it's usually with a twinge of nervousness. There is something about being close to death, or Really Bad Stuff, that puts off a certain odor. I know that before Mas was born, my biggest concern was whether or not to circumsize him, and whether they would let me nurse in the delivery room. Those idyllic thoughts were slammed in the face by a whitish-blue baby who remained fisted and would not eat, coupled with the multiple birth defects and small head circumference, "fruity" smelling breath, non-stop crying, breathing too fast, etc. Things like that tend to knock you out of your comfortable bubble world into another world, a world where you can kind of see who you used to be, but can't quite bridge the gap to get back over there. I can see it in pictures of our family before Mason was born, especially pictures of our daughter. You can see the openness and peace in her eyes, replaced by sadness and fear in the pictures taken after his birth. I thought Steve Gonsalves, an investigator on the show "Ghost Hunters," put it well, when he said during an episode where they wanted him to fly to a location, that while watching everyone on a plane, he thought, "All of these people are going to die." Why did he think that? Because he was on a horrendous flight that almost crashed. That tends to color your world and make you see things differently. Is that fear? Or just experience? I know you can counter this and say, "You must have Faith." Bold words, and just the thing people like to say to people like us, but once you have smelled the other world, it's hard to remember what Faith smells like. I don't know how else to explain it.
I know that whenever Mas catches pneumonia, or runs a high fever, or just acts "off", I prepare mentally for the fact that we could be facing days in the hospital, or lots of worried moments at home, or lack of sleep from getting up to listen to him breathe. I don't think it's like that for parents of "normal" children. Their thoughts still smell like cinnamon and sugar and warm cookies and freshly mowed grass. My thoughts tend to smell like hospitals, and hand-wringing, and worry. I guess you can say I over-worry, or that I'm anxious, but I tend to view it as keeping myself safe. As long as I keep that smell in my nose, I will never be tempted to have the universe lull me back into that Other World. I know that the jolt of going from minor worries to Major Worries was a horrible shock to my system, and you see, I don't wish to go through that again. Although, I sometimes wistfully watch parents of healthy kids and wonder if they will ever appreciate the aroma that surrounds their lives.
I am told repeatedly by parents of messed up kids that other people "just don't get it." I agree, wholeheartedly, but am unsure how to explain it to them. I used to know people with special needs kids and feel bad for them, but only for a moment or two. Then, it was back to my (sweet-smelling) world of raising my daughter. Then, my son was born. Now, I get it. I wish I didn't. My friend shared a story with me about her daughter's last IEP. How she sat in the room full of people alone (she is a single parent) and cried during most of the meeting. How the teachers were cold and unfeeling. How no one understood what it was like to be her. Again, I get it. I know that smell. Wish I didn't. We recently took Mas to a neurology appointment; the first one in over five years. Saw the light in the doc's eyes as she ordered a multitude of tests, and knew that she could be opening Pandora's box of medicine, and that we could be tumbling down the rabbit hole of "what if's" and "let's test for this" and "why don't we try this" and "let's give this medicine a try"...I knew that smell. I got it. Wish I didn't.
It's hard to see the world in a safe and happy way when you have seen the other side. (I am also aware that there are levels to this other side, and I am not in the lowest level of that world. I am all too aware we could be dealing with respirators, or still have to deal with a feeding tube, or have a child that couldn't move, or communicate at all. Knowing that, however, does not change the world we are in.) A recent mailing from Mason's school quoted a parent as saying, "We are the only population that hopes we outlive our kids." I get that. My friend and I were talking about how Mason would live as an adult. It's not something I choose to discuss with very many people, but I knew she would understand. I'm not sure how he will live. Will he stay home with me as long as I am able? Will he be good enough to go to a group home? Do we want him to? I used to imagine a retirement on a lake in northern MN or Canada with a boat and a lot of dogs, with our kids visiting on weekends and the grandkids learning to fish off our dock. Now, I don't see that. Not that there aren't happy moments. I strive to find them every day, if only to teach our daughter that her life doesn't have to be forever altered because we chose to give her a sibling. I try to fill my soul with moments of gladness wherever I can find them. But, there's no denying that we've been thrust into this Other World. I get it. And it stinks.