A few weeks ago, I wrote about how life can make you question everything you believe.  

I quoted Rebecca, a reader who said, “With the initial wound of the TSC [tuberous sclerosis complex] diagnosis still fresh for us, I have shied away from examining any belief. Because, frankly, anything I have ever believed about this world now seems a fallacy.”

But that wasn’t all she said in her comments on an earlier blog post.   She also said, “[I] realize that everything I have believed is not false, nor is it broken.”

When you have the house of your belief knocked down to its foundations—not a “for sale” sign on it, not even an “in foreclosure” sign—but the absolute devastation of a tornado that tore through town and picked your house to destroy—you may think you’re stuck with the wreckage, but you’re not. You can build something new.

But building this new house is going to take a different kind of faith.

When my house first fell down, I kept trying to rebuild what I had before or what I saw other people have, and my house kept getting knocked back down. I couldn’t understand at first, because their houses were fine: sturdy and strong, they could withstand hurricane-force winds. What was wrong with mine?

For years after Jessica was born, I wanted everything to be normal. To be like other people, with soccer practice and PTA meetings and a steady paycheck. A house with a backyard and a two-car garage, a mortgage and a car payment.

But what I had were hospitals and clinics and lab tests and notebooks balanced on my knee.

If I may be frank? I sure as hell didn’t want that to be my new normal.

I will admit I am not the world’s fastest learner. I kept trying to build a life like other people have. Until I realized that having your house leveled to its foundation means you can rebuild it however you like. And the critics can kiss your ass, because they have no idea what your life is, and they wouldn’t survive it for six days, anyway.

They’re not in the ER for the third time this month, balancing a notebook on their knee. They don’t know what your life is like. They can’t even conceive of it.

In a lot of ways, my life after Jessica has become very unconventional. It’s not unconventional like those twenty-year-old bloggers who think an unconventional life is traveling around the world and not holding a steady job. They’re as conventional in their ways as any fifty-year-old banker could ever be.

What you need, when you’re staring at the wreckage of your house, is real unconvention. The ability to question everything.

And the faith that you can make it all mean something in the end.

When we look for help rebuilding our houses, what we get is guidance meant for other people: happily married parents with good jobs and two healthy children and a dog, with loving grandparents who watch their kids so they can go on a date night.

But none of that matches the life that you’re living. You’re not worried about whether you should buy your kid a car. Your kid is never going to learn to drive. “Save for retirement!” the personal finance Web sites say, which would be nice if you weren’t spending every last dime on your child’s medical expenses. And beyond that: you can save for retirement, or you can take your daughter to Disney this year. Because next year she may not be with you.

Or she may; she may outlive you, so you have to make sure to provide for her years after you’re gone. So, yeah, it’s a lot more complicated here, and every choice you make has ramifications you can’t even imagine.

You make the choices anyway, because that’s your job, and standing frozen in the headlights doesn’t help anything. You make a lot of wrong decisions, and people criticize you for it, but they’re not the ones in the ER for the third time this month, a notebook balanced on their knee.

So here’s where the faith comes in. No one you know has the life that you have. They don’t get it. They may think they have some idea what you’re dealing with, but they don’t have a clue. Their idea of a problem is their kid needs glasses. Your kid needs a new heart, or dialysis three times a week, or a drug the FDA hasn’t approved yet.

So you have to build your house on your own, without anyone else’s help, without one single blueprint to look at, and have faith that you know what you’re doing.

But you don’t, of course. You don’t have the first idea. And people will come along and helpfully point out that the window looks funny where you put it.

And you’ll ignore them, because you have to. Because this is your house you’re building. They can do what they want with their houses. But this is yours, and if it doesn’t look like anyone else’s, that’s not your problem. It doesn’t have to fit into the subdivision or you get kicked out by the neighborhood association. This is not that kind of house.

This is the kind of house you build to give your life meaning, and you build it on love and single-mindedness, intention and determination. Faith that you can do it, even if you don’t know what the hell you’re doing.

Your house will never be finished. You’ll remodel it all the time. You’ll get used to that, too. People will say, “Aren’t you ever going to be finished?”

And you’ll answer, “Not while I have breath left in my body.”

A few of my favorite things

LESSONS IN MAGIC
A CERTAIN KIND OF MAGIC
THE IMPROBABLE ADVENTURES OF A MIDDLE-AGED WOMAN
DOJO WISDOM FOR WRITERS

5 Comments

  1. You are a remarkable woman, and believe me when I say I pray nightly to all the gods and goddesses out there thanking them for giving me a healthy child. I don’t believe I could walk a single step in your moccasins. I don’t think I have the courage, and I hope I never have to find out, but if god forbid I do, I will look to you for inspiration. You and your daughter are lucky to have each other.

  2. I once attended a "Homelessness Panel" in college. Always a good student, I listened intently, trying to imagine what it might be like, until, of course, in crept the judgment. A young man, Spoons, tried to explain why he chose to remain homeless. Really? Choose to be homeless? No one chooses to be homeless.

    You know what? We were both right. No one chooses hardship. What I lost in my moment of judgment was Spoons' real message–he chose an unconventional way of living because it was the only way for him to actually survive, to live.

    My life has become like Spoons'. I get the looks. The looks I once gave him. The "really? What are you doing, and why the heck are you doing that?" kind of looks. The "your house looks kinda crazy, when is it going to look normal again?" kind of looks. And, I'm slowly getting to the point where I just don't give a damn what you think of my house. Thanks for helping me along the way.

  3. My daughter left your link on my grandson's caringbridge site. She wants her friends to see that her house, although nothing like theirs, is coming along just fine. She has been remodeling for six years and like you knows her job will never be finished. In a time when money is tight she will take her son to Florida and enjoy time away because you are right when you say next year maybe too late. I am proud of my daughter in so many ways for the courage and strength I see everyday. She has had months like you when the third trip to the hospital in one month almost seems normal. I know I would love your house because the love you have for your daughter is the foundation you are building on.

  4. Really, really beautifully written – and the kind of true that rings like the peal of a bell in an otherwise silent night.

  5. Such a powerful post. I would like to show this to everyone and anyone who stands in judgement over a fellow being. Jennifer, it's an honour to read your blog.

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