Saturday, April 29, 2017

The Ethereal Of Everyday.

One of my friends was talking about looking back on pictures of our kids when they were smaller and how it almost always moves you to tears.

All those sweet moments. It feels like they slipped through our fingers like some ethereal, beautiful light. 

How lovely, and how sad in some ways. To have something so lovely and then watch it change into something equally lovely but not the form you once knew. And those kids are always growing, always changing. Always amazing me. 

I still feel sad and angry sometimes that my diagnosis prevents us from having any more children. Some people might risk it, but generally speaking with PH, it is a bad idea. A scary one. 

And, the truth is, I think I'm tired. 

No, I know I'm tired. Like falling asleep standing up tired. And I have been for a long, long time.

Special needs kids often don't sleep well or as long as they need to. Which means you won't. Though, even with that, I feel like we got pretty lucky because it's not as disruptive as what many struggle with at all. Motherhood, in general, is an exercise in true sleep deprivation. Ideally, we'd all have enough competent help and kind help for it not to be our reality, but for many of us, it is. You don't get a village. You might not even get a neighbor. 

My youngest was born early, I was still deteriorating for awhile and yet we had to jump right into therapies to help her survive and get better. The tired never stopped. The sleep never came. She was eating every hour and still not getting enough food. The treatments for her continued even as I sacrificed more sleep by taking on hours at the university. On top of a move to a larger home, I look back and am not sure how we did all of this. How I did what I did on most nights of no rest and complete worry. I don't believe that I could do it again. Though, I would and more for any of my kids. 

To be honest, looking at my friends with new babies all I can think of is how tired they must be. 

Did I mention that being that exhausted all the time will get in the way of treasuring the moments as our kids grow up? Because that is also a thing.

Having another newborn, I can't even imagine what functioning would look like. What the new exhausted would be. So, that's definitely a dream to go on a shelf, one to be examined from time to time, but not opened again. 

I find myself looking forward to what days are like when everyone is in school. What writing more feels like, doing more. Having the quiet that has been missed for so long that I can't remember it. 

What am I when I am unrestrained by taking care of people at all times? Do I even remember, or will it be something entirely different from who I was before having my children? 

It doesn't make your body failing and forbidding another pregnancy easier to deal with, it is its own grief process. Talking to other people, I'm not sure it's even a process that ends. For those of us who wanted that family above all and everything, I think it will always hurt. Always. It's easier having been able to have our three, but it will always hurt. And it will always make the tired seem like a fine tradeoff for getting to have another amazing human being around. 

These crazy, frail human bodies rarely line up with the dreams we have for ourselves. 

So, I try to dream of other things. Bigger vacations. New fashions for everyone. More toys for them, and more new experiences. More work time for me, more quiet time with my husband. More sleep, more school involvement, more in general, because people forget babies take so much. 

We forget because it always seems so worth it. 

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