Puzzle Pieces

I’m so excited and trepidatious about getting all caught up on my blog today and tomorrow. I feel like I’ve been stuck in a cyclone, with nary a minute to sit down and compose any words. My loving husband sees me. And he’s afforded me 36 hours AWAY including a night in a hotel, in order to nap and write and nap or whatever. I’m excited to unload many of the thoughts that have been swirling around, and feel some outside support, which inevitably follows when I share in this way. And trepidatious, as I look hard in the face of all that’s been going on. Or at least most of it (not even I can put it ALL out there). As I left the house this morning, Jeff said, “Have fun with your emotions!” I rolled my eyes, yes, but there’s truth there.

When it comes to parenting Keira, though all is going relatively well, it’s never easy. I hesitate sometimes to keep writing, thinking that it must look like I’m moping and can’t just get on with my life. Like I keep writing about the same things over and over. It never ends. For a while, I had numerous people recommending that I write a book. I’m not against the idea, assuming that most of the words are already written. My biggest hesitation, though, is that there is nothing to wrap up my narrative. No pretty bow at the end of the story. No resolution. It just goes on and on. I feel that way about my blog, let alone a book. But…it is what it is and I’ve decided to keep writing for myself. And even better if it provides support to other parents of kids with special needs. Even better if it helps my supporters who are interested to know what this life is really like. This blog has helped me keep my head above the waves.

The last time I blogged was the last time I was away, back East visiting an old friend, my sister-in law, and my adorable nephew. I had a moment of clarity on my flight from Nashville to D.C. A shortish flight, we didn’t reach a very high elevation. And the day was clear, so I looked out over the plains, the roads, the rivers. The houses looked like matchbooks and the cars were even smaller. The people, miniscule. I remembered being about 8 and finding a massive ant hill in my neighborhood. I watched the hill for hours, it seemed, trying to fathom how many thousands of ants were there on the edge of the sidewalk. Each of them was so busy. So tiny, but so determined. Each of them seemed to have a very important job and if I were to use my sneaker to demolish the hill (which, I did), they were back at work immediately. Yet, most of the people and cars that passed by didn’t even notice the ant hill, let alone each little ant.

When I was flying over cities and towns that day, I imagined that all the little people down there were like ants. So many of them that, as individuals, we can’t possibly be aware of them all. Yet each of them, presumably, is as wrapped up in their daily trials and tribulations as the next person. Each of them are just as loved, just as anxious, just as determined, and just as troubled as I am (or more!). Each is capable of loving others passionately, abusing others brutally, building bridges, and breaking them. It was a humbling burst of awareness. To remember that God knows and cares about EACH one of those little ant-people. That each one of them matters. But also a reminder to keep perspective. My life is just one little life. I’m important, yes, but my world is not THE world. Since that day in July, when I feel overwhelmed, I try to imagine myself on that airplane, looking down. The image helps me put things in perspective, at least momentarily. I tend to battle with the idea that everything is very important and urgent. This reminds me that the world keeps on turning.

I have a ton of anxiety…SURPRISE!! I have a ton of anxiety and, as you can imagine, much of it gets centered on Keira. Now, I had a lot of anxiety before Keira, but its come back in a new and visious way, with all kinds of ways to justify it, so I’m dealing with it anew. I’ve found a wonderful therapist (Finally!) I’m finally seeing that I have feelings. And I have feelings about my feelings. And I have feelings about my feelings about my feelings. (Feelings³) I waste way too much energy worrying about how to I ought to feel about things. I’m trying to sit with the idea that I’m a pretty darn ok person if I stick with my primary set of feelings. And I’m trying to figure out what those primary feelings are.  I feel pretty vulnerable about this. I think too hard. I wouldn’t share it except that I expect I’m not the only one and perhaps it could help you to know you aren’t alone.

Richard Beck is a psychologist and theologian who writes books and a blog called “experimental theology.” Jeff reads his stuff regularly and we call Beck his “theological boyfriend.” Anyhow, Jeff occasionally shares his insights with me. One idea that’s stuck with me is Beck’s notion of anxiety (which is a word largely interchangeable with fear) as being the biggest spiritual challenge of modern day. It’s rampant. It’s alive and well in many of the people around us who are overextended and overworked. We’re all trying to do all the right things in order to shield ourselves from _____. All this doing, doing, doing, and we don’t even realize it’s rooted in anxiety. Anxiety is sneaky that way.  

A good friend who is a nurse recently told me about her observation of patients that are facing cancer. The ones who are “brutally educated” (as Jeff was once called), tend to have a harder time coping. They want to know all they can know, inside and out, all of the options. It’s harder for them to trust the process and there is more fear of making the wrong decision or missing out on something. Whereas the less educated folks seem to have some healthy resignation. “What do we do doc?” Ok, lets’s go.” I’ve never wanted to be the latter person, but I do now. I want to believe, really believe, that everything is as it should be, that I am good enough no matter what. The effect of which, I imagine, is that my brain can shut off. Take a rest, stop running like it’s going to miss something.

But it my brain runs all the time. ALL. THE. TIME. Round and round I go, making sure I don’t forget anything. OT. PT. Speech. School. Meds. Bottles. Preauths. Doctors. Massage. Stretching. And on and on and on. It’s not unlike a person with PTSD (Posttraumatic Stress Disorder). This tape keeps playing over and over and over in my head and I’m trying to keep some inevitable catastrophe from occurring.

I feel overwhelmed so much of the time. My energy level is so up and down and I’m sick of it. My physical/emotional well-being has seemed so precarious in recent months. I hate it. It’s gone so far as to me daydreaming about how nice it would be if Keira was in the hospital. Because THEN! Then someone else would be taking care of her and I would know that I was doing what needed to be done.

You see, on a daily basis, Keira seems to be like this enormous jigsaw puzzle. Every doctor, every therapist, and every teacher gives me pieces and tells me that they should probably go together. Heck, maybe I contribute more pieces than any of them. So, every day I wake up and I try to frantically put this puzzle together. I don’t know if I have all the pieces. I don’t know if all the pieces I do have even go to this particular puzzle. I don’t know if the puzzle is even meant to be complete. And I get so frustrated because everyone thinks they are helping by giving me pieces, but nobody is helping me put them together. Meanwhile, Keira sits by, often with Grandma or with her newest caregiver, smiling and happy, eager for attention and love. And if I could just get these pieces together, then it would be easier for me to just be with her.

I don’t expect Keira to ever be normal. I don’t. But I do expect myself to do EVERYTHING for her that I possibly can. If Keira doesn’t meet every last drop of her full potential, then it’s on me. And that’s harsh. I know it is, but that’s how I’ve been operating. In my mind, the “good enough” parent just isn’t good enough in this situation. And I’m trying to work through that.

Deep breath. Sigh. If you've read all of this, I love you! And here's your reward: