Living in the Land of Fear or Fearing Fear Itself

There is a light that happens every evening, when the warmth of the sun has left and all that lurks are cold shadows, silver streaks and the uncertainty of your very vision. In the Land of Fear this is the light that permeates every moment, wetting the world under it, making things drip with a humid decay. Ruined houses sit in rows, each house the same, each row identical, on and on toward a horizon that never comes. This land stretches on forever.

Cats missing legs or tails or bits of ear pick from garbage left by sad lives. There are small dolls, scraps of paper with unheard or unanswered love notes on them, fish scales and bones. When you walk the streets here you must watch your step, things are underfoot that move.

When your child is diagnosed with anything, this is where you live.

I had a birthday recently. I’m older now. Again. This year I felt the change. I am different, for the first time in a long time I can feel where I am not the same. Not just in the body which bears the scars of the shift. Not just in the heart which has grown with love. Not just in the mind which bends but I have learned will not break. I am different in someplace deeper. I no longer fear anything.

What we have all been told is the worst nightmare, and what most certainly is: the loss of a child whether literal or the death of the child you thought you were to have has happened to us. Our Land of Fear brought home ruined houses filled with empty cribs, snakes curling around peeling slats and moths grown fat from shattered linens. We walked the streets. We could not get out. We could not find the horizon.

But you learn to breathe through this. You follow the bubbles to the surface. You find new light again.

And so I now know the worst can happen and I know that the very worst thing can be the best thing that ever happened to you. And it changes you. Fear lives in the deepest part of each of us. It hides there, peering out with eyes of coal. Every once in a while you see it blink. This is how you know it’s there.

This is not to say that I never feel scared, I still do from time to time. But I no longer care. I can stare back at those eyes. And I, do not blink.

Should I Stay or Should I Go?

Since December we have been enjoying a relatively quiet period, no more hospitalizations or scares. Things are evening out a bit and leaving time for the normal things: therapy, doctors, trips to new specialists in Willa’s relentless drive to accumulate a legion of medical admirers. Which of course makes me incredibly and daily nervous. I am knocking on wood, I am wishing on pennies, I am dreading another stay chez CHOP.

And why? I mean, no one loves these things but what is it that really bothers me about the entire hospital stay, other than the abject fear for Willa’s life and well-being? The boredom? The lack of control? The sense of the parallel universe spinning in an orbit away from all light and normalcy and just, well, better meals? What?

I think all these things I can bear but what is so terrible is my nightly agonizing over whether to stay in Willa’s room or go home and get some sleep. This is of course after we are through anything questionable or scary. These are the nights when she is totally stable and doing her usual, which is to say, not sleeping.

When I sleep at the hospital, there is no sleep. When I go home, I cry all the way to the elevator, down to the garage and all the way home. I feel like a traitor, a Benedict Arnold of epic proportion, a skunk beyond all reckoning. I feel like I am the worst mother that has ever walked the face of this earth. I feel like everyone is watching me with disapproving eyes, they peer into my soul and condemn me. Is this dramatic enough?

It’s awful. It’s unwinnable. If I stay I am sacrificing the only sleep I may get this year. If I go I am so guilt ridden my night is riddled with bad dreams and sadness. The doctors all tell you to leave. The nurses say that they are paid for this and can go home and sleep in the morning. I have been told that it’s ok, that I am not the antichrist of mothering, that people need to sleep and she will be well looked after. And she will be, but not by ME. And so we go around again…

Willa has had 6 hospitalizations and each time this question gets no easier to answer. I am so far incapable of making any peace with this, of being decisive, of managing to take care of Willa and myself at the same time. I can’t do it with any grace or fortitude. I have no conviction. Either way it sucks and that’s pretty much all I can get to in all this.

And so I dread the hospital… For this above all reasons. I dread walking out the door and leaving Willa behind. I dread the loss of all sleep and the crushing exhaustion of a medical emergency and then the long recovery. Is there any way to make peace with this? I think I need Willa to tell me what to do but so far she ain’t talkin’.

And so I’ll knock on wood, I’ll wish on pennies, I’ll pray for good health and sunny skies and the wisdom to know next time.

My Dream Deferred

When I was pregnant with Willa I spent the hours on bed rest imagining the things we would do together. We would see movies at the theater, gorging on popcorn and candy. We would investigate the gardens of Pennsylvania, prying open the petals of spring or fall pansies to look at the lady within. We would bake ill-conceived cookies and laugh at our clumsy results. We would take long walks on the shores of our Lake Galena, her in her stroller, me in my full glory parading my daughter about the periphery of a man-made lake dotted with small sailboats.

Now certainly this year has not been without adventures. We have learnt the inner workings and labyrinthine doings of the hospital. We have strolled the corridors from the MRI suite to the cardiology floor and back again. We have welcomed friends and family members who are so loving they come to us, though no one lives close by.

This past year I put aside my dreams for Willa and my time in the more immediate concerns of her health, her development, the formulation of a program for her care, assembling her team. Movies, cookies, strolls were as out of reach as Paris, the moon, long division.

But spring is here.

I heard the last churn of the enteral pump last week signaling the end of Willa’s 3:00 feed and I made a decision. I, with my daughter alongside, was going to charge the evening. I loaded Willa into her car seat. We took the short trip to the fabled Lake Galena. I put her in her stroller and we strolled. In my full glory I paraded my girl up hill and down, round bends and back again, spying the daffodils burgeoning in the woods, seeing the bluebird in the field, feeling the long forgotten sun. I walked so far I took all the skin off my toes and felt nothing. I walked so far with her that I was sore for days afterward. My dream was now my evening. My hope was now my life.

There are moments when you have these funny little successes, things that were just so banal and effortless in your previous life you cannot imagine that one day they will be your personal climb up Everest. But that walk was. That walk took a year to get to. And it was so worth it.

In the Land of the Village

For the last few years before Willa’s arrival my husband and I had lived a rather solitary life as a couple. We took up residence in a lighthouse of the mind. Still projecting light and welcome, but having very few visitors. Then Willa came to live with us by the sea and since then, well, the boats keep coming.

Willa has a speech therapist, an occupational therapist, a physical therapist and a special instruction educator come to the house weekly or bi-weekly. We also have a nurse during the week to accompany us to all the many appointments and to give me a few hours of sleep the mornings I can get them since our girl would rather not at night. Our lighthouse of happy solitude has become a village of helpers, or rather trained medical and therapeutic personnel, Willa’s entourage or team.

They set the hours on our new clock, moving hands I am unfamiliar with. They populate the air with their voices, speaking to the baby in foreign tones and singing unfamiliar songs. They introduce what is to be our routine. They are the ones to reveal new tasks, new strategies, new roads for exploration. In the Land of the Village, the many are for the One. My One: my Willa.

Our Lighthouse is now a thing of the past. There is no more solitude; there is no more stasis. Things are never where I leave them anymore. The inanimate objects of my home have found legs and walk all over the countertops. They find their way to places I would not have imagined for them. The refrigerator has new contents daily that come and go without my hand to choose them. The radio is set to stations that continue to surprise me.

There are sacrifices that surprise you in these new worlds. We have had to sacrifice our aloneness, our privacy, our hold on the unchangeability of our home. It is an incredibly small price to pay for what is gained. But still I feel the loss. It is weird to have the first noises of the day originate from someone else in your kitchen. It is strange to have people walk in the back door at the same time, every week or bi-weekly. It is odd to think that other hands help shape my child’s destiny, other hands that do things I cannot. I have so much to learn.

It is important to every so often pull the boat, the one stashed in the reeds, out from its hiding place and escape from the Village. It is necessary to put the three of us on the plank seat, grab an oar and row for the horizon, out to sea rather than in from it. We need to still confront our waves as a family, making the decisions for us, finding our way out of the storms that may surround us.

Only from out there in the brine surrounded by gulls can we turn back to shore, see the light from the lighthouse guiding us in and row for the many that wait for us on the shore, the Land of the Village we now call home.