For Better and For Different

For the special needs parents

We were young and in love our first Valentine’s Day together. I was working my first grown-up job and he was still finishing school. We thought life was busy, with tests to study for and official work email to check, but we always seemed to have time to be romantic and flirty, to hold hands or sneak in a little inappropriate touch in public, just for the thrill.

He was newly sober, so we sipped sparkling cider and ate chocolate and although I don’t have a perfect memory of the evening, I’m certain there were flowers. We were young and in love, and he always remembered flowers. He bought me a soft fleece blanket, with red hearts and pink I love you and kiss me sentiments sprinkled all over it. Our four-year-old thinks it is hers now, and she’ll tell you so, with no thought whatsoever to the special memories those silly hearts bring back. The irony of that is not at all lost on me.

We pulled out the vows we had read to each other just six months earlier, and we looked down at them with pride, admiring our intentional word choice and beautiful promises to be selfless, and in absolute disbelief that those things we said could ever be hard to remember, much less hard to keep. We were young and in love, and while we felt the weight of those vows and the meaning they held, we still enjoyed carrying them.

But life gets heavy. The baby is crying and we are not sleeping and there are no diapers left in the house. And then the pediatric specialist says something is wrong. And the bills start coming and the appointments steal date nights and we have three young kids and one who needs a little bit extra and we can’t just call a babysitter like that, like it’s easy.

We were young and in love, but it didn’t always feel like there was so much to carry.

Now it feels like the easiest things to drop are those vows.

***

I never really noticed special needs parents until I became one. All of the mamas at the park, at the gym, dropping kids off at Sunday School, they mostly looked a lot like me: their hands were full as they wrangled their little people in and out of places, but it was motherhood as usual. The first time I was called to pick up my little one from childcare for being, well, for not fitting the mold he needed to fit to be there, I felt it, the weight of being unusual. The second time, I mourned what I thought could be happening. The third, I sobbed.

And then it clicked. The reason I never noticed the special needs parents is because they aren’t there. So many of them, maybe most of them, aren’t coming to church, or dropping kids off at the gym, or chatting with friends while their kids play at the park.

Because it’s just too much to carry sometimes, being unusual.

But I can’t put down my child. He needs me in a more profound way than I ever imagined I would be needed by someone. I shift the weight around and try to find a comfortable place for it on my hip, but I tell myself over and over again that I cannot drop it, I cannot put down these needs, the ones people call special but in my most honest moments I have a few other choice words for. If I drop them …

… my heart cringes at the thought.

But those vows? They were so easy for so long, when life felt for better.

This is worse. This is much worse.

I know that a marriage needs many things, but those needs aren’t special, not compared to a little boy who won’t — or maybe he can’t — look up when you call his name or stop when he is running into the street.

So I’m tempted to just set them down, those vows with such intentional word choice, right here, for now, until life feels for better again.

Because I do not think I can put my husband first, not when my child’s needs are right in front of me.

Because we just put $600 for a month of behavior therapy on the credit card, we cannot think about a date night.

Because I thought the entire day about who will take care of our son when we are gone and he has the nerve to want to have sex? Does he not think about these things at all?!

Because we were supposed to be able to go to the park, the gym, to school, but now we are so unusual.

Did we vow for "unusual"?

***

Seven years have gone by since our first, and another Valentine’s Day has just come and gone. We ate pink and red M&M’s, and I hung a banner with glitter hearts I found in the dollar bin. We didn’t go on a date and I told him not to buy flowers because remember that therapy bill?

But I watched him love that special little boy. I watched him with his patience, his tenderness, his unwavering commitment to be his dad no matter what he needs. I watched him practice matching and listened to the inflection in his voice as his enthusiasm grew with each correct match. And then we locked eyes and shared a moment of pride that you have might have to have a special little one to understand: he wasn’t doing this last week, now he is. Our eyes communicated a gratitude across the room that words would fall short of capturing.

Maybe this isn’t worse at all.

He used to hold my hand as we walked. Now he is busy keeping a solid grip on our little runner. I used to act like a giddy young girl and flirt with him shamelessly. Now I spend most hours of the day disciplining inappropriate behavior.   

Life did get heavy. But maybe it didn’t get worse. Maybe, instead of putting down those vows so I can pick up the needs, maybe if I just saw all the ways we are carrying them together I would realize we have enough strength to hold it all.

Because maybe we are just different.

But isn’t everyone?

So for better or for different, I’m not putting him down again. We are carrying this together.

And it feels lighter already.