Yesterday was a rough day for me. As we enter February, I can’t help but think about what life was like two years ago. We had no idea what was about to hit us. One moment the doctors were telling us there was no hope, this child would never make it, pack up shop and call it a day. But then the next moment a doctor would tell me I could easily make it to 40 weeks and stop worrying quite so much. Literally four days before my water broke one of the doctors in the office told me I had no need for bed rest and that everything looked fabulous! I was a little more cautious than that, but still, her opinion made me feel as though we had weathered the storm and that our trial was over.

Our trial had yet to begin.

And so I’m a tad bit more emotional than usual these days. {Which is bad. I’m already an emotional blubbering mess.} Add to it that Peter is working nights this week and you’ve got a “watching The Bachelor and eating thin mints” kinda life.

Which brings me to today’s topic: How Awareness Changes the Perception of a Feeding Tube.

Our situation with a feeding tube is much different than most. We’ve never lived without one for Charlotte, barring the first three weeks when she was on TPN for nutrition. It wasn’t a change for us, it wasn’t a choice of giving up on oral feeding. We’d never had that experience with her, so going to a permanent feeding tube (versus the NG tube) wasn’t a massive change for our family.

We’d already seen what incredible benefits the feeding tube could bring– easy weight gain, no struggles administering medications, relief that our daughter was getting food. So often we hear, “She doesn’t even look like a preemie!” to which I have to reply, “That’s because she has a tube feeding her 18 hours a day. Genius.” (OK, I keep the sarcasm to myself. But really? That’s an entirely different post).

In some ways, the feeding tube has removed all evidence of the horrors we survived. It’s low profile, so it’s barely noticeable. There are adorable accessories for it. {Like these. And these. And these. Remember how Charlotte has a birthday coming up?} And we do everything in our power to make sure that tube feeding seems like the coolest thing since sliced bread.

And it works. Our family has embraced the feeding tube. Caleb gets so annoyed when people try to give Charlotte food. “She doesn’t eat with her mouth, she eats with her tube!” Goodness, people, how can you not know that? {He has a bit of an attitude. We love him for it.}

But it also creates situations where people think we’re a little stronger than we really are. Having a baby with a feeding tube means you can’t just drop your kid off at the gym’s babysitting center. You can’t just call up a friend and say, “Hey, I have this thing to go to today, can you watch Charlotte?” It means arranging nursing hours and constantly being with your child.

Because as happy as people are that Charlotte doesn’t “look” like she’s premature, they aren’t always comfortable working with the devices that allow her to maintain those chubby, chunky legs.

We’ve adjusted to this life. We don’t expect to be able to go out on Friday nights, and let’s be honest, our budget doesn’t really complain about that. But having a special needs kid (not just a tube fed kid) does get exhausting. It does get isolating.

Charlotte can’t attend play group because she’s in therapy six hours a week. I can’t go to Girls Night Out because there isn’t anyone to watch my child. I look around and realize that the people who understand the most, I know through the internet. I’ve become an internet friend kinda person.

It’s like the adjustment you make when you have kids. Suddenly, you find yourself cut off from your childless friends. You watch them make plans with such ease and lack of coordination and you stand there in pajamas and wonder how you’ll ever have time to brush your teeth, let alone go out on the town. We watch other families swap babysitting or attend playgroup, or coordinate “me” time and we stare. We wonder how that’s even possible.

We fight for things like state funded respite care, and we are told that Charlotte’s disability isn’t enough of a disability. And so, living in limbo land, between the world of special needs, and the world of “typical” children, we find ourselves lonely and isolated. We spend our evenings eating Girl Scout Cookies and watching trashy television. {OK, only I do this. Peter would never, ever watch The Bachelor. And he prefers ice cream.} Because that’s as crazy as we can get.

Be aware. Notice those parents who can’t attend activities. Continue to invite them, to reach out and let them know that you want them to be there. Help them re-learn how to participate with the outside world. Because even though “you would never know” that Charlotte was born prematurely, I know. I live with it every single day. I don’t have the chance to forget. The feeding tube, the trach, the oxygen, the developmental delays– they don’t let me forget, they don’t give me the afternoon off for “me” time.

That’s what awareness does for me. Friends and family who remember that we’re still around, even when we’re not: those are the most aware. And we desperately and dearly love them for it.