Last week, I wrote that Joscelyn would be undergoing testing to determine the cause of her intermittent vomiting.
A CT Scan at the hospital revealed that the ventricles of her brain were swollen with cerebrospinal fluid. Her neurosurgeon diagnosed her with progressive hydrocephalus. On Thursday, September 5, Joscelyn underwent surgery to have a VP shunt inserted to help drain off the excess CSF fluid her brain is producing.
It was her 7th surgery.
Her daddy (aka “Pringleman“) told his co-workers in his out-of-office e-mail that he wouldn’t be at work that day because doctors were installing a bilge pump in his baby’s brain. :)
(For those of you unfamiliar with nautical terms, the bilge is the lowest compartment on a ship, below the waterline, where the two sides meet at the keel. It also refers to the often dirty and smelly water that collects in this area. Water from rough seas, rain, leaks in the hull or spillage that does not drain off the side of the deck drains down through the ship into the bilge and must be pumped out to prevent the bilge from becoming too full and threatening to sink the ship.)
He was kidding of course, but the words have stuck with me since the procedure.
We have spent close to three of the last fourteen months in the hospital. The longest stretch that we’ve managed to stay away since Joscelyn’s initial surgery in July of 2012 has been 5 months.
I don’t know about you but I’m a planner by nature.
I have a smart phone but I still keep all of my appointments written down in an old-school Daytimer, just because the visual learner in me likes to see “the big picture” for the month all in one place. I like routine. Don’t get me wrong, I enjoy spontaneity on occasion but I find that too many changes to our schedule brings a level of chaos that I’m just not comfortable with.
Nonetheless, the last fourteen months have been filled with inordinate amounts of chaos, stress, confusion and turmoil. Having a child with special needs tends wreak havoc on one’s schedule.
I’ve had to cancel so many plans and back out of so many commitments over the last two years, I finally just stopped making them entirely.
Did I resent feeling a need to do that? Yes. I didn’t want to turn down speaking engagements because they involved travel but I was afraid to leave Joss. I didn’t want to be fearful of planning a family vacation because we’d be too far from our local hospital and doctors if she developed a problem. I wanted us to be the poster family for a catchy slogan like, “We might have epilepsy in our lives but it doesn’t have us!” I wanted to be like this amazing, intrepid family who travel all over the world with their five children, one of whom has special needs. I promised myself that once we’d been out of the hospital for at least six months, I’d be more open to accepting more opportunities, letting others care for Joss more and being braver about making plans.
We made it five months.
Just this morning, I called to cancel the appointment we’d made for today at the Harmony Barber Shop in Walt Disney World to get Joscelyn’s first non-surgery related haircut. When I made it, I was hopeful that today would be a day of fun and healing; filled with pixie-dust and magical photo opps-
Instead, I find myself trying to pump bilge,
nasty, smelly, brackish, yucky bilge,
Not bilgy water exactly but bilgy thoughts; negative thoughts that threaten at times to sink me entirely.
The negativity (like water) that flows onto and over the deck of the ship (my mind) doesn’t become bilge until there is much of it that it begins to collect. In the same way that sailors have to monitor the level of bilge water to protect the ship, I have to monitor my negative thinking and pump out those negative thoughts before they overwhelm me.
How do I do that?
1) Gratitude: Joss just celebrated six months of seizure freedom. The hemispherectomy surgery was finally declared a success! We also weaned her from ALL of her anti-seizure medication! She is learning to walk, learning to speak through sign language and the use of a speech device and even uses Righty on occasion to help stabilize herself. She is recovering well from this last surgery and shows every indication of only getting better as time passes.
2) Teamwork: On a ship, no one crew member is responsible for monitoring bilge. Every crewman shares that responsibility. If I think that I alone am responsible for Joss’ care, I can easily get overwhelmed. The reality is that her father, her extended family, my friends, her doctors, her therapists and many others are standing by to help me whenever I need it. (And when I follow through with the courage and willingness to actually ASK!) The degree to which I allow others to share in the responsibility of Joscelyn’s care has a direct effect on my bilge level.
3) Awareness: On one level, I have despised every second we’ve ever spent in the hospital. No one wants their child to be sick or to see them suffering and in pain. Add to that, the fact that there’s a fine line between a hospital room and a prison cell. You can’t leave. You have little control over your environment. Your privacy and personal freedoms are largely stripped from you. The average hospital stay is alternately stressful, depressing and boring. The policies and procedures, while necessary, almost seem designed to produce maximum irritation on the part of the patient and their family.
But whenever I focused on the people we met at the hospital, instead of the circumstances that led us to be there, I seemed to always find something inspirational, beautiful and healing to celebrate.
One day, when Joss was watching the Wiggles perform a traditional Caribbean folk song called “Brown Girl in the Ring“, a woman from housekeeping walked into our room. She started mopping the floor and then stopped suddenly. She stood still for a moment with her eyes closed and then started humming softly and swaying from side to side. When she opened her eyes, she smiled broadly at us and explained, “I’m from Jamaica. I remember dancing to this song with my brother and mother when I was a little girl. I haven’t heard it in many years. Thank you!” She then finished mopping the rest of the room, still humming, with a faraway happy look in her eyes.
On another of our stays, we were visited by a young woman in a wheelchair who was giving away books to the sick children in the hospital. She was born with a condition that left her unable to walk and had, herself, spent much of her childhood in and out of the hospital. Now that she was older, she refused to let her physical limitations keep her from serving others.
This last visit only lasted about 36 hours but in that short time, we met a young man who had been considering epilepsy surgery. After meeting Joscelyn and hearing her story, he was inspired to go forward with it. Joss may only be two years old but she is making a huge difference in people’s lives!
I don’t feel guilty anymore when my thoughts take a bilgy turn. I know that people don’t want me to feel discouraged and are often quick to
correct try to encourage me. But just like water, life is unpredictable. Sometimes the sea is calm and sometimes it comes at you with unbelievable force and fury. It’s hard not to take on a little water when the waves are towering over and crashing into you in the rapid succession that we’ve experienced over the last couple of years.
But I also know that the storm won’t last forever. Even monsoon season has to end some time, right? :)
We were really hoping to avoid getting a shunt for Joss. Shunt technology hasn’t really changed much since the 1950’s and failure is quite common. Shunts can become clogged, individual parts may malfunction, they can become infected, they can under or over-drain the CSF fluid, they can become reprogrammed and they can be damaged or broken through accident. Some patients with shunts have gone 20 or 30 years without a problem and others have had to undergo multiple shunt revisions in a very short period of time. Joscelyn’s doctor estimated that she might go 5-7 years without needing an adjustment. Once a shunt malfunctions, the dangerous symptoms of hydrocephalus typically return very quickly and a surgical fix must be sought immediately.
The truth is, every day of Joss’ life is a day in which we may need to return to the hospital, possibly with very little notice. That’s just part of our “new normal”. I will likely never feel totally comfortably leaving her for long periods of time or going anywhere located very far from a good pediatric hospital. (You probably won’t catch me placing non-refundable deposits on reservations, either.)
But that reality doesn’t necessarily preclude a reality in which I can someday make at least some plans.
I just need to learn how to go with the flow a little better. The simple fact is, I may set course for one destination and end up somewhere else. That’s not necessarily a bad thing. It’s just the nature of the sea. We never know where the wind and waves will take us.
But we also never know what unexpected gifts the tide will bring in.
So, we’ll just keep swimming.
And we’ll pump, pump, pump.