Understanding

I've finally arrived.

I'm at the place in this journey as a new special needs parent where I'm in search of understanding. And it's hard to find.

I do love my friends and family, and as I'm learning how to navigate this new way of life, I try to share everything I've learned as I go. That's part of the reason I have this blog. But I'm finding that some will "get it" and some won't. Why? Because they aren't as vested in this journey as I am. They don't have as deep an interest in it. Not that they don't love Christian and want the best for him, they just don't understand. And when they leave our presence or get off the phone with me, they don't have to think about it anymore. Not their fault, not at all. But this is where I've arrived, it's where we've arrived. The realm of understanding how a child develops has just splintered off and we are now on a foreign path that is difficult to fathom for most people.

I'm not mad about this at all. I accept and embrace this path because it's ours. I don't expect anyone to really understand unless they have a special needs child. It's like a secret club. And I can't say that I've completely given in to it or accepted it 100%. But as I see other special needs children or meet other parents of special needs children, I feel a connection, a comfort...an understanding.

No, I'm not mad. What I do find myself feeling is frustrated at the lack of understanding. My patience meter is running on low these days as it is, so beware. But how many times do I have to explain this treatment or that treatment? Do I mind explaining it on my blog, absolutely not. And those that follow my blog have some sort of understanding, at least. But people in my every day life who are trying to make sense of what this world is like for me have no idea.

They have no idea what it's truly like to love your child so much you bargain ridiculous things with God in your head just to test yourself to see what you'd be willing to give up. They have no idea what's it's like to love your child so much you would do ANYTHING for them and their healing. It actually becomes your career. I mean there's the obligatory "I'd do anything for my child," we all have as parents, but to live that day to day is a different story. To look at your child every day and think, "Okay, what will I do for my child today that will help him heal," is also an entirely different mindset.

"Are these treatments working?" - I believe they are. Which treatment, who knows? Who cares? Something is at work and I'm not willing to stop all treatments but one at a time just to find out.

"So did the doctor tell you when he would get better?" - No, because he's not a psychic. There is no date written in time that we as humans have privilege to. And I'm not concerned with "the moment" he gets better because we have to accept him now and forever. There won't be a "moment." It is a process. It is a journey.

I think the hardest part of this arrival into the search for understanding as a special needs parent is that I'm starting to realize that people might be scared of Christian. By this I mean, those that know and love us are reluctant to hold him or care for him because it's scary. They don't know how to hold him to where he's comfortable. They don't know what do to if he coughs really hard or sounds raspy. They don't know what to do if he's crying. So they'd rather not do anything.

This is where I get frustrated. Not taking into consideration that it took me months to learn how to take care of Christian, get to know him again, learn with him, learn for him, I expect that those around me are doing the exact same thing. Is this fair? No. But I find myself frustrated, saddened, a little angry that anyone would be afraid of him. He's just a baby and you just take care of him differently. What's the big deal?

It is a big deal. It's a huge deal that's just part of my everyday life and at this point I can take care of Christian with one hand tied behind my back. So why expect everyone else to be able to do that? I don't. But I do expect people to want to try. For example, my grandmother goes in the chamber with Christian. She mentioned that she's noticed a change and sometimes that change is greater from one day to the next than even one week to the next. She gets it!

My husband says I should be more patient with people. He's probably right. It's just that when people are what seems to be afraid of Christian, I feel like they don't believe in him. And you all know how I feel about people who don't believe in my child.

So I'll make a deal. I will have more patience, if I can receive more understanding. Okay?

Yeah, I know it's not that simple.

Understanding. It's going to have to be mutual. While I'm searching for it, I'm going to have to give it...along with that whole patience thing my husband was talking about.