Silver Linings?

"She was frightened, and certain that she was incapable of the task ahead.... Then something began to change in the room.... She was larger than the feelings, she held the feelings in an embrace, and murmured kindnesses to them and comforted them..."  (From Bitterblue by Kristin Cashore.)

I am larger than my feelings. I embrace the emotions that swirl around in this PANDAS/Lyme cyclone. From helplessness as I lie on my bed with a headache, listening to my husband chat with the kids as he makes them lunch, to frustration. To anxiety about the amount of money we've spent on medical care. To fear over germs invading my home and my son's mind. To grief over the past, over his memories, over my memories. To worry over my daughter. To loss over not spending enough quality time with my husband, or anyone, really.

I am larger than my feelings. I murmur kindnesses to them and comfort them, as Kristin Cashore writes. And so I embrace my own brain fog, my apathy with the life I've been given these last few years, and I begin to accept. I do have Lyme Disease, much as I'd like to think that it's just an anomaly that both my children have it and I'm CDC positive and I've had chronic fatigue symptoms for years. It's OK. I can take off a Saturday and NOT do laundry, not think, not fret.

But so often, I feel alone. I have wonderful friends who try to understand our experiences, but they cannot. I have wonderful family who is there for us in many ways, but they're not living in our house. Only another parent of a child who is ill with a perceived rare and misunderstood neuropsychiatric disease truly understands, usually. The other parent who lives in my home is my husband. It's good we're still friends after all this tension.

As Catherine Woodwiss writes in probably the best article I've read about PTSD, "A New Normal," "Surviving trauma takes “firefighters” and “builders.” Very few people are both."

Her words make sense to me. People like my in-laws are there for us in times of FIRE. They're also there for holidays and visits. Some friends have taken care of my daughter when my son was very ill. Other friends support us on a day-to-day basis, just by talking, by sending an email hug. But if someone's not living our lives, not checking our bank accounts, not tucking a child into bed, that person really has no clue as to the amount of stress we are undergoing. And that is where the loneliness comes in.

"You're a fragile group of people. You need to be handled delicately." So spoke my friend's brother-in-law to her, one day, and she remembered the words, giving me permission to share them here.

We are fragile. He's right. We've seen too much, slept too little, had our lives altered in unexpected ways. We will never be the same. There is no going back and doing it over again. And some of us parents are ill ourselves.

We go to work if we can. But colleagues don't want to hear details on a daily basis. We paste on the smiles, do our jobs, then go home to messy houses or tantrums or tics or too many bills.

We contend with doubting doctors and ball-busting bureaucratic school systems. We act as pharmacists, doctors, psychologists within the home to our children. We rarely get out with spouses or friends. The financial toll increases the turmoil. 

I embrace you, life. Gone are the Broadway shows, the travels to Europe. I am saving my family and the time to do that is now. My life is not how I would have written it. But it is only part of me.

For there IS more to life than doctor appointments and bills. There is the sound of my son gleefully yelling, "I LOVE you, Mommy! I LOVE you!" There are paintings my daughter places on my dresser, with bright flowers and suns. There is the warmed-up, show-shoveled car in the morning, courtesy of my husband. There is the refrigerator stocked with food from my mother-in-law. There is the message in my in-box from a good friend. There is the Starbucks tea I had, last minute, with a friend last night, when I knew I had to break out of my self-pity and brain-fog and just get myself out of the house. 

Yes, there has to be some good in all this. Take my friend's brother-in-law, for example. He GETS it. My best friends understand because they have empathy. And they let me talk. I have met the most amazing, warm-hearted, persevering people. People I'm proud to claim as friends.

This ain't no crystal stair, to paraphrase Langston Hughes. I'm not one of those people who can pretend that all is lovely all the time. And I don't have much time for those who would minimize my experiences. I am stronger than the adversity that has struck us. Doesn't that count for something?

"The world will break your heart ten ways to Sunday. That's guaranteed. I can't begin to explain that. Or the craziness inside myself and everyone else. But guess what? Sunday's my favorite day again. I think of what everyone did for me, and I feel like a very lucky guy."--From Silver Linings Playbook.

I suppose that my life is writing its own course now. I have choices. And one of those choices is to try to embrace it with all of its ups and terrible downs, rather than fighting it and wishing I had something else. There are some dreams I need to let go. But there'll be new dreams, perhaps. And really, who knows what the future truly holds for us?

Comments

[happy parents day]

Happy Parents Day