The drive up to see Henry’s specialists is a long one, and most of the time we need to wrassle everyone in the car and hit the road before the sun’s even come up. Clinic days start promptly at nine. We leave the house at six-thirty to avoid rush hour traffic, we drive 90 minutes (if we’re lucky) up to Park Ridge, and by the time we find parking and grab a muffin for June, it’s time to report to the radiology lab for Henry’s pre-admission ultrasound. By 9, I’m exhausted and we’re usually only still in the waiting room. Clinic days are a doozy.

Every clinic day is different, but we’ve developed something of a tradition. Every time we go to the Spina Bifida clinic, I swing by Starbucks, purchase a big-ass iced chai latte, and pull out Natalie Merchant’s Tiger Lily CD that my husband purchased at Half Price Books last year (it’s always in our car because seriously? Have you heard it? That album is great). I turn on the second track and drive into the sunrise with this song on blast. I even throw in a fist-pump or two if it’s not too early.

I love her songs. I was eight when that album came out, so it reminds me of early fall afternoons as a third grader, watching episodes of Pop Up Video and eating fruit roll-ups while I struggled to do my math homework.

I blast that shit.

“Too noisy!” June hollers from the backseat, but mama don’t care. There’s one song in particular that I have to hear.

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they’re seeing 

Maybe it’s too on-the-nose. Mama don’t care. I had heard this song before in the third grade, and it was catchy, and I’m pretty sure the Pop Up Video version made my afternoon, but when I listened to it after Henry was born the entire world melted away and I grabbed my noise-cancelling headphones and blasted it because I was hearing it all for the first time. This is our anthem. And what more appropriate place to listen to it when we travel back to the place where we were first told our little boy would never walk?

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way

I adore this song and it resonates in my bones more than any Haas/Haugen song at Sunday Mass. It’s become our anthem. This child will be able. This child will not suffer. He will make his way. It might not be the same way everyone else travels, but dammit, he will make his way.

And it’s haunting — if I could go back in time and tell my old self anything, I would do exactly what Destiny is doing in this song. I would laugh. At the cluelessness of the doctors. In anticipation of our joy. I would whisper in my own ear — he will be able. He will be gifted. He will make his own way. You have no idea. 

I was accused a few months ago of lying. The specifics are unimportant, but basically I got into it with a bunch of strangers in an Internet combox who were asserting that a life with spina bifida is miserable, horrible, and that abortion would be a much preferable alternative. Needless to say, I disagreed. Others chimed in, saying that spina bifida was “incompatible with life” and that I was “minimizing” Henry’s “suffering.” Obviously, spina bifida was awful, and I had no earthly idea what I was talking about. Man. I’m the worst!

Is it difficult, this road we’re driving down together? Yeah. It is. And I want to write more about the difficulties we’ve faced — as a family unit, as a married couple — because sugar-coating our journey ain’t gonna help anybody. My marriage has scars, and I won’t pretend that it doesn’t.

But isn’t that what’s great about wonder? It’s a feeling of surprise, mixed with admiration. We are living this life. We’re walking down this difficult road together, our spina bifida journey. And I fully expected when we got the diagnosis — in all my ignorance — that it would be nothing but hardship and constant misery. And it’s just not. And I’m surprised. And I laugh. He is able. He’s not perfect. None of us are. But we’re able. And we’re making our own way.

And this boy? My smiley boy? So worth it.

I wouldn’t trade this fabulous life of ours, this sometimes-daunting road we’re walking down together. We’re making our own way — with love, patience, and faith. And I wouldn’t trade it for all the gold in Gringotts.


10 thoughts on “Wonder

  1. You being so open about Henry’s story and seeing his updates on your facebook has made the prospect of being a mother in the future a lot less scary. I’m to a point where I want to accept any child Andrew and I end up with neurotypical or non-mobile we just want a family at the end of the day. Thank you for helping me realize that being a mom isn’t measured by some standard of how “normal” your child is, but is measured by the love you have for them.

  2. I completely agree. Plus, I think people forget that the “perfectly healthy and whole” child a mother gives birth to might not be… well, any of that. What if the child has severe ____ and never walks or talks? What if ___? The point is, you can’t predict what your child will be like or how “typical” they will be. I have four children, three of them terms pregnancies and a whole host of issues between the four of them. Two have a neurological speech disorder. No one could have told me that pre-birth.

    Also, how can parents tell what they can handle and what they cannot? We grow so much as parents and what one thinks they cannot handle… they can. I promise. Does God/life throw us MORE than we can handle? YES. How else are we to grow, change, and learn to rely on God and others?

  3. I hope you realize that the last time you had a Facebook post about this song, I immediately missed my Merchant cassette (YES. I AM THAT OLD.) so I went and bought the album on iTunes. Now I totally tear up when I hear this song.

  4. I love this! I don’t remember if I told you, but my one of my cousins has spina bifida. He’s 15 now, and I can’t imagine my life without him! The doctors gave my cousin (his mom) a worst-case scenario, but I am so, so glad she chose life. Great post!

    • you DID tell me, Liz, and I am forever greatful that you did!! Especially right after we got his diagnosis, it was extremely encouraging to hear people’s SB “success” stories 🙂

  5. Love , love , love this song. I watched the video on *cough* VH1 when I was 20 years old, nursing my first born son. Yes, I am quite a bit older than you!
    I was a huge 10,000 Maniacs fan in my middle school years. Great music. I played my cassette tapes all the time! I jut recently upgraded and bought Blind Man’s Zoo on CD. Do I sound ancient yet?
    I am looking forward to getting to know you better. 🙂

  6. I have heard that song a million times and I guess I never really listened. I will definitely have to play this for my daughter on our next trip to the neuro!

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