On the road again

Our youngest, Asher has hydrocephalus, a condition in which the ventricles in his brain don't do their job of bringing his spinal fluid down to his spinal cord. He had a brain shunt surgery this past winter and is doing very well...

Yesterday, at my parent's cabin, Asher woke up at 5:00 a.m. I didn't want to wake up the rest of the house with screeches and screams, so I put him in the van and we went for a drive, not really knowing where we were going.

We saw the sun rise, some sheep, some cows, and long stretches of road. It was a beautiful start to the day, even if I wasn't at all happy to roll out of bed before the sun.

We drove to town and picked up a coffee and some diapers. Then with nothing else left to do, we sat in a parking lot. Asher watched Wall-E while I read a book and sipped my mocha. We did that for quite a while, lazy and content, until Asher said, "Mama...beep beep." And I asked, "Does that mean you'd like to start driving again?" He looked right at me and gave me his crooked grin, nodding so obviously that his chin would meet his chest as his little noggin went back and then down, very dramatically. I laughed, and then we were both a little more ready for our own private little adventure than we had been earlier.

Asher sat quietly, taking in the scenery and munching a graham cracker while I sat in awe of the beauty around us, and wondered how the songs shuffling through the IPod could be so perfect for our little journey. And then there was a shift in me and I wept. It was the strangest thing.

I was crying and laughing a little at the same time. Maybe it was the way the light was cutting through the tall pines. Maybe it was the words of the songs. Maybe it was just plain exhaustion. There was something changing in me, I know that for sure.

I thought about how I haven't really spent much time in quiet with Asher, not just the two of us. There's been nothing quiet about his life, nothing quiet about him. And here we were, driving along, and I was struck by the beauty of it, all of it. All of him. The beauty of the time with him on that drive, and of every moment I've ever had with him.

For the first time, I simply let myself see how hard our road has been. I finally sat with it, I looked at it and saw how very long this road has been. I saw the truth of it all and felt the relief of recognizing your own pain, and I cried all over it.

The day before we left, I sat with some lovely ladies who asked a lot of questions about Asher's condition. I haven't done that in quite some time, most people I'm around already know. So as I talked and watched the concern and curiosity around the room, I realized that I've always pushed away the idea that Asher's hydrocephalus was any kind of big deal at all. After all, there are much worse things, right? Why complain? Why dwell? Why make it more of a thing than it is?

But you know what? It has been really hard. Really hard. No, not as hard as a terminal illness or the loss of a child. No, but hard.

When other moms compare their everyday struggles with what's gone on with Asher, and they excuse their own pain by saying, "Oh I'm sorry...this is nothing like what you've gone through," I like to say, "Well, maybe it's not the same, but that doesn't make it easy."

I haven't been giving myself that same grace. It is one thing to be strong, to have a very true sense of peace that carries you on, and quite another to deny yourself the human need to weep, to validate your own struggle, to take a deep breath and let out a, "This is just plain hard."

During Asher's months (and months) of colic, and then his diagnosis and surgery, it's as if I put him in a car and just drove, just kept going, fixing, doing...being Mom. And yesterday, I put him in the van while I grumbled, not wanting to be up so early, not wanting to drive aimlessly. But because of the beauty that was handed to me on that unexpected journey, in the perfect songs swirling around us as the sun lit up the day, something lifted. Something hard turned to something good. So I laughed while I cried because I could see that without the early morning human alarm and the grumbly walk to the car, I would have missed it.

It wasn't until we took a break from the road, took a breath and rested, that we could look at each other and decide to keep going, feeling a renewed hope in the adventures ahead. In much the same way, I have a new perspective because of the road we've been on. One that has helped me to see things in a way I would have never been able to see them without the bumps and sharp curves.

It has been hard.

Heather writes at The Extraordinary Ordinary


  1. Oh wow - I haven't read your personal blog yet(assuming you've talked about your son there) so I had no idea. What a lovely, thoughtful, moving post. I'm so glad your little human alarm clock got you up and out so you were able to have this experience. And thanks for sharing it with us. Enough of 'well it could it be worse' - yes, it could, but this is your reality and you're right - it sounds hard. I'm so glad to hear he's responding to the shunt - I can't imagine how terrifying it must be for you. I'm off to find your personal blog now.

  2. Thanks for sharing your great story. I hope to one day soon be in this same frame of mind with my situation. Thanks again for sharing!

  3. Heather, thank you for this. Thank you for taking time to remember your journey. Thank you for giving yourself (and the rest of us) permission to recognize that the journey is hard. And thank you for sharing your journey with us.

    This is why I subscribe to your blog. Your writing makes me happy. :)

  4. Heather I too have a special needs child that had colic for months and months. I have sat in ICU for a month with a lifeless baby. I have endless breathing treatments that have to be administered along with other medicines. I have not had one night's sleep in a long time. I too have a very LOUD child. I too am one of those moms that tries to say it could be worse. So thank you for this beautiful reminder!


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