Tag Archives: UGA

A Parallel Universe

Second Annual “Blogging for TSC Awareness Month” Day 29

by guest blogger Sara Weathersby  (Decatur, Georgia) 

At a UGA football game circa 1999.
At a UGA football game 1998 or 1999.

Unlike many who have blogged about TSC, I am not diagnosed with it or caring for someone who has the diagnosis.  I became aware of TSC and the havoc it wreaks through my friends Becky and Chris and their son Connor.  Becky and I went to college together and remained friends in the following years.  We were delighted to find out we were pregnant at the same time.  Connor was due just a month before my second son, Malcolm.  My older son, Max, was a young toddler at the time, so I would share product recommendations and advice with Becky over the next several months.

One day, Becky told me that the doctors found something irregular with Connor’s heart on an ultrasound and were going to observe him more carefully and call in a specialist to examine him once he arrived.  I honestly, confidently believed with every fiber of my being that the doctors were being overly cautious.  If ever there’s a time for doctors to be so cautious, it is certainly when the health of a baby, particularly my friend’s baby, is at stake.  Neither of us were very worried as we talked about ponytail holders and chapstick going into the bags to go to the hospital.

When Connor was born, Becky and I texted back and forth.  The delivery went well and she and Chris were just waiting for the nurse to bring him back to them after some observation.  They waited to hold and cuddle their precious new son.  I waited for the obligatory pictures to pop on my phone.  They waited to gaze into his eyes and memorize every inch of his perfect face.  I waited to hear once and for all that everything was great.

Becky's wedding reception 2010.
Becky’s wedding reception 2010.

But it wasn’t great.  While in the nursery a nurse noticed Connor was having a seizure.  While Becky and Chris waited, the nurses and doctors were trying to figure out what was going on with Connor and how to treat him.  They diagnosed him with TSC and kept him hospitalized for a month.  They determined that he would need neurosurgery to remove a tuber from his brain to hopefully stop the seizures.  The doctors expected him to have developmental delays but didn’t have a clue what that would look like.

This is not the kind of thing that happens to me or my friends.  We work hard, pay taxes and make good choices.  How could this be happening?  How could someone that I know and love have to go home from the hospital without her baby?  What could I possibly say to Becky and Chris?  I certainly had no “been there, done that” mommy advice to offer.

Somehow, Becky and her family were absorbed into some kind of parallel universe where you don’t get to room in with your newborn and take him home to his new nursery in a day or two.  Instead, my friend stayed at the side of her baby’s incubator surrounded by tubes, wires and machines that allowed the doctors to best figure out a plan for his treatment.

Meanwhile, I’m waddling around, near the end of my own completely healthy pregnancy with my completely healthy son.  I wondered what in the world I had to offer this friendship while Becky was going through so much.  I felt a strange sense of guilt and sadness.  All the while I shared in Becky and Chris’s joy that their son was born.

Sara's wedding 2009.
Sara’s wedding 2009.

If I was feeling all these emotions, how much more intense it must have been for Becky and Chris!  I grieved for all the expectations, spoken and unspoken, I had for this new phase in my friendship with Becky. We were both moms now and our sons were supposed to play together.  But what now?  How was TSC going to change our friendship?  I determined that it was better to show up not knowing exactly what to say or do and risk putting my foot in my mouth than to do or say nothing.  Becky and Chris sat in that parallel new parent universe where nothing comes easy.  They were so sad that Connor was having seizures and had been diagnosed with TSC but yet overjoyed to have a son.  They were devastated that there son is not typical but hopeful that his growth and development will come along such that TSC will not put any limits on what he can do.

In the universe I’m accustomed to of course parenting is tough and an emotional roller coaster.  In the parallel universe where Becky is, it seems more intense.  There are more doctors and appointments to keep, more worry, more money to spend, more resources to find.  Everything is just more.  Meanwhile, my own little one made his way into the world and disrupted everything in just the way you expect.  How do I step into this strange place where Becky and Chris are without sounding trite or lacking compassion?

It actually turned out to be pretty easy to be maintain our friendship.  We just kept texting and talking about our boys.  Connor’s milestones look different

Connor in the cow costume, Malcolm as the monkey, Max as the big pirate, and their friend David the pirate.
Connor in the cow costume, Malcolm as the monkey, Max as the big pirate, and their friend David the pirate.

from Malcolm’s.  Connor has to work so much harder to get from milestone to milestone, but he’s doing it.  I was afraid Connor’s diagnosis would put awkwardness in my friendship with Becky because I just wouldn’t understand how different it is to parent a child with special needs.  When the boys play together (as much as they do as young toddlers) it’s clear that Becky and I have a lot more in common as moms of toddlers than there are differences in parenting a special needs child and a typical child.  The fact that Connor has special needs actually didn’t alter our friendship all that much.  Perhaps that’s because Becky and Chris love Connor so completely and have managed to accept that TSC is a part of their lives now.   They haven’t let TSC cast a shadow on their lives or rob them of the joy of parenting.  They have made it easy to ask questions about TSC and what it means for Connor.

As the months went by, I started to realize the idea of the parallel universe where families with special needs children live wasn’t really accurate.  We buy the same diapers, and clothes for our kids.

Malcolm doesn't mind crawling around with Connor, even though he can walk already.
Malcolm doesn’t mind crawling around with Connor, even though he can walk already.

We live with the same healthcare system.  Instead of thinking of families with special needs children living off and away somewhere doing mysterious special needs things they don’t want people like me bugging them about, they’re actually at the same Target store I go to.  We live in the same world but unless you know someone whose child is ill, you can keep going along in your own circles and never hear the stories of these families and their precious children.

In Georgia, we recently had an opportunity to legalize medical marijuana for children with seizure disorders.  Our state representatives failed miserably to pass the very popular bill.  This experience made it clear to me the importance of raising awareness of TSC and the reality faced by families with special needs children.  Just because a policy, or law or healthcare plan works for you or at least doesn’t hinder you doesn’t mean that you don’t have a voice in improving the lives of our most vulnerable children.  Those of us who are blessed with healthy children owe it to our friends, relatives and the people in our communities who are raising special needs kids to keep investing in those relationships even when, and especially when, a child is diagnosed with an illness or syndrome.  We can make our healthcare system work better and our government more responsive.  But first, we all have to be aware.

In the dorm -- Myers Hall at UGA -- in 1998.
In the dorm — Myers Hall at UGA — in 1998.
Both pregnant at Becky's baby shower 2012.
Both pregnant at Becky’s baby shower 2012.

 

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The worst job I ever had.

The worst job I ever had was not actually the worst, but it was exceptionally stressful in my 20-year-old mind that cared too much what other people thought.

It was a thankless job — the kind of job you keep a secret. The kind of job you lie about and claim you’ll be busy studying when you’re actually scheduled to work a shift. The kind of job you swear your friends to secrecy about.

Was I a stripper? A drug dealer? An operator of a webcam sex site, as an RA in my dorm community was found out and fired for? Please. All of those are far more socially acceptable on a college campus than what I did.

I worked for parking services.

Yes. I wrote…wait for it…parking tickets!

Potential social suicide, but you try finding a decent part-time job in Athens anywhere near campus when you’re deathly afraid of waiting tables (never been a waitress because I don’t have to try it to know I would suck at it–I’m sorry. I just realized I wasn’t listening when you ordered. What did you want?)

The job was so easy. You were assigned specific lots to monitor and given a handheld device to check plates. I had to make sure the proper parking pass was displayed and then run the plate for other violations if it wasn’t. If the machine barked at me, yes, literally barked, I had to radio my supervisor for a boot. It was great because we were specifically instructed to sit in our cars during class changes. We struck as students were getting their learn on. So suck on that, kids trying to get educated! I never ceased to be amazed how many students were on a first name basis with my supervisor. They’d rack up the tickets, get booted, daddy paid, then get the boot removed. They literally drove themselves door to-door.

My saving grace was that my assigned lots were graduate student and faculty. I did not want to work commuter lots under any circumstance as that was where I was most likely to encounter other undergrads that I might know. Then one day, my supervisor radioed me with a horrifying request that I monitor the commuter lot near North Campus where all the business majors park. In my time at UGA, it seemed like everyone majored in business but me, the journalism major. All my friends parked there, which was fine, because my good friends knew my secret.Problem was, a whole lot of casual friends and acquaintances parked there, too. It was like a stealth operation. During class change, I fought the urge to hide in the trunk and slunk down in my seat. As I made my rounds, I was prepared to throw myself over hoods to go into hiding.

But then I heard it. “Becky? What are you doing? You work for PARKING SERVICES?” Oh, crap. Busted by guy I knew from my dorm days. I saw him quite a bit because he had a crush on one of my friends. I went into my usual ramble for when I would get outed, “Blah blah, never heard back from The Gap blah blah pays more than the library…”

“That’s cool,” he lied. Lied, most likely, because he then pointed out that he wasn’t parked in an actual space. This lot was infamous for filling up quickly and forcing people to trek all the way out to the Ramsey gym lots and take the bus back in. He was worried I would write him a ticket. I assured him I wouldn’t, but I also warned him my shift was almost over and that I couldn’t make promises for what would happen then. He seemed satisfied and went to class.

When I clocked in for my next shift, my supervisor asked me into her office. Turns out jerkface got a ticket later that day. And what did he do? Complained to parking services that I had told him it was okay to park there. I assured her that I warned him he was taking a risk by parking there, and I had not made him any guarantee that he wouldn’t be ticketed. They were actually pretty nice in the department and understood that I wasn’t going to write a ticket on the car of someone I knew, especially face-to-face. But he could have lost me my job telling them I was giving permission to park illegally. I should have let him have it, but the on the few occasions we ran into him downtown, I just ignored him and walked away.

There was a big giant bright side to the job though. Remember how I mentioned I patrolled faculty lots? I had one particular English professor that I hated. She was a writer. A writer from Hah=vahd. She went so far as to let her students know how much better Harvard was than Georgia — then why didn’t they hire you? She was like the female version of the guy in Good Will Hunting that likes apples, but doesn’t get Minnie Driver’s number. She supervised a study abroad program in England I was on in which she asserted her superiority daily in class and scheduled a mandatory activity every Thursday night, even though classes ended early Thursday and we had Fridays free to travel and this prevented anyone from going very far.  Almost two months after we returned, my two roommates and I received an e-mail that the laptop we were assigned was “broken.” It  worked when we turned it in, but now we were expected to pay for it. However, we were not to be defeated in a battle of wits by a professor that was still dumb enough in 2000 to post students’ social security numbers on her door, so once she was directed to contact our lawyer (a roommate’s dad) we never heard another word.

Not long after all this drama, she busted me in the faculty lot she parked in. “Ohhhh, I didn’t know you were a meeeeeeeeter maid,” she sneered in a condescending tone. I just smiled. “You move fast. I think you wrote me a ticket last week. I parked on the lines because I only had to run in for a minute…” I don’t remember what I actually said, I only know that for a few seconds I debated my options. She still had the ticket with her unpaid. I could offer to take it, and possibly get it taken care of. Generally, parking services doesn’t do that, but they might if I explained the awkward position with my professor. But no. The sarcastic “meeeeeeeeter maid” played over in my mind. So I walked away after carefully studying her vehicle. I vowed I would ticket it every opportunity I got (sadly I never got one).

I still take joy in that ticket. It was worth every bit of stress.

Nonetheless, I took a 50 cent pay cut the following year to shelve periodicals at the science library. It took less of an emotional toll.