A Special Kind of Hell

Well faithful readers (and not faithful readers), I’m back. I hope, and doubt very highly, that my absence in the blogosphere ruffled any feathers or caused any distress. How about a quick update before I get to the point? I stopped writing mainly because I dipped my toe into the minefield of resuming work while disabled.

I landed a six-month contract with the local affiliate of the National Alliance on Mental Illness (NAMI). It was amazing. In addition to public speaking and facilitating a support group, I was handed the opportunity to run a public outreach program and spearhead the implementation of a class for peers (people living with mental illnesses).

I learned things and that always makes me happy. But even more important, I worked in an environment where I didn’t need to hide the symptoms of my mental illnesses. I could talk about it freely and even make bad jokes. It was incredibly freeing. But all good things come to an end. It’s should be no surprise that budgets at non-profit organizations are tricky at best. Although they tried, there was just no way financially to keep me.

A few things happened as my contract was coming to an end. The bearded gentleman changed jobs from a daily ghastly hell to IT Director for a little company in another county. We learned we had to move a month earlier than we expected. And, wait for it, I got a text message from Mini-me’s father saying his tumor had returned and he needed to have another spinal surgery in a few short weeks. Talk about a bad month.

Here comes the back story. When Mini-me was in the NICU after he was born, they found a sacral dimple. Basically, this is a hole at the top of his butt crack (there’s no delicate way to to go there) that goes from the surface down to the spine. It alerted the doctors to the possibility of a spinal cord birth defect. After a few MRIs on my tiny infant and a consultation with the best pediatric neurosurgeon at Cedars-Sinai in Los Angeles, it was confirmed. My baby had a spinal birth defect. My baby needed spinal surgery. My baby had a benign tumor in his lower back tethered to his spinal cord. My heart was breaking into a million tiny pieces.

He had the surgery just shy of 6-months-old. It went really well as far as I remember and the two weeks of immobilization were surprisingly easy. He healed up fine and had a hot scar to show for his efforts.

We were told if he made it to five-years old without re-tethering, the chance of it ever returning dropped substantially to somewhere around 10 percent. And he did. I thought we were home free. Check that pesky birth defect off the list of things to worry about.

About six weeks ago I got the text from his father. Let me elucidate a point. His father and I have the most ridiculously disfunctional coparenting relationship. We only communicate with text messages. I don’t know why he does it, but I do it because they’re admissable in court. Should we ever end up in a custody case again, they are evidence. Plus, it means I rarely have to put my PTSD (Post Traumatic Stress Disorder) through dealing with him in person.

So, back to business. It would be entirely accurate to say I lost my cool. Which, frankly, is justified in this instance. There were a lot of tears and some vomit involved. I immediately called the Bearded Gentleman. Even though we’re not married, he’s been around for almost half of Mini-me’s life span and he considers Mini-me his stepchild. Although he conceals his emotions far better than I do, the Bearded Gentleman was clearly distressed. I think it was harder on him simply because it was his first time through this circus.

Mini-me’s father charmingly indicated I could call him to talk about it (he never answers the phone) or I could talk to his wife in person that evening. Trying to choose the lesser of the evils, the Bearded Gentleman and I prepared to speak to the stepmother. Normally when I have to speak with the father face-to-face, we talk in the driveway. But the stepmother invited us inside and we entered the house where my worst trauma was perpetrated. This was the first massive mistake. It set off a stream of panic attacks, severe anxiety, and flashbacks that lasted for over a month. The Bearded Gentleman rarely makes demands of me or tries to lay down rules. He’s a pretty mellow kind of guy. But after seeing the results of that night, he made a very simple demand that I not ever, for any reason, enter that house again. I gladly agreed.

The information on Mini-me was pretty cut and dry. My little boy has been growing at an alarming rate, shooting up at least three inches in the past six months. It’s sort of shocking really. I’m a smidge and barely reach 5’1″. He’s 9-years old and already at 4’3″. Perhaps I have the Jolly Green Giant in my family tree somewhere. I wouldn’t know. I burned that tree to the ground awhile back. At any rate, the epic growth spurt also caused epic growth in the tumor. They were never able to remove it. The tumor had defied statistics and gone rouge, reattaching to his spinal cord in the process.

In early April, Mini-me had surgery. Again. It was surreal. This time his father and stepmother, step and half siblings, and grandparents sat in one area of the waiting room. The Bearded Gentleman and I sat a safe distance away. Not surprisingly, the reception volunteer was entirely confused that he has two mothers. Welcome to modern families lady. Geeze.

Mini-me was amazingly brave as they readied him. He held onto Dutch, a little stuffed puppy given to him by the Bearded Gentleman’s Godmother. He answered questions from the nurses and anesthesiologist with a strong, clear voice. We were prepared for an 8-hour surgery but it took just five. The neurosurgeon talked to the four parents afterward and assured us it had gone well.

And this is where my title today, A Special Kind of Hell, really kicks into high gear. We saw him first in the Pediatric Intensive Care Unit (PICU). Not entirely awake from the anesthesia, he was sleepy, confused, and in pain. We would find out soon that the surgeon had damaged a nerve ending causing severe nerve pain spanning one side from his bum to the back of his knee. It was so severe, we couldn’t touch the leg with a blanket without him crying out. The feeling that cry ellicited in my core is viseral. That scene in Terms of Endearment where Shirley MacLaine is screaming at the nurse to give her dying daughter pain medication is not melodrama. It took a good deal of thought and restraint in order to treat the entire staff, from the doctors on down, with a calm, clear respect. I don’t think it matters whether your child is crying from spinal surgery or an ear infection, that parental instinct is the same. I can’t say for sure but I expect it remains the same no matter how old your child is, even into adulthood.

Mini-me spent five days at Cedars-Sinai. His father spent the first two nights with him and I spent the rest. He had to be on his stomach the whole time, only sitting up to urinate into a plastic urinal. I can say it took me a bit to figure out how to hold the urinal while holding up a doped up kid with no aim. They did not teach me that in college. So, I learned that. I also learned that my child under-reports pain. He has no gauge whatsoever. I learned to measure his pain through his emotions. When the pain was manageable he was calm. As it grew, he became increasingly hysterical, balling his little fists against his face shedding tears of frustration as he struggled to tell me what was wrong. I learned to circumvent that meltdown by asking the nurse for pain medication early in the cycle.

I learned, or maybe was reminded of, a few things about myself during our ordeal. I’m strong. I often forget. But it is as true now as it was when I was a small child wading my way through life with an unstable parent. I am both smart and flexible. I am able to use these gifts to my, and Mini-me among others, advantage when I remember I have them. And, most of all, I am resilient. Even though the past few months have knocked me off my moorings, I am coming back. Slowly but surely, I am coming back to myself.

Most importantly, I appear to imparted my gift of resilience onto my son. After three weeks of tummy time, through which he complained very little, he returned to school last week. He’s still on restriction (no running, jumping, or generally being a physical little boy) but he’s happily back in his groove. He’ll never forget what he’s been through but he’s not letting it stop him from living an awesome third grader life.

And his Mom is so proud of him.


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