Month: March 2020

It has become so easy for me to be so wrapped up in my own experiences that I fail to see the bigger picture. I feel like I’m constantly looking for it, but over and over again, I’m short sighted. Part of that is due to the lens through which I see the world now, shaped by my experiences as a special needs parent.

I want to see past my own scope and consider how my words and actions affect others, but I’m consumed by thinking about my own feelings and family. It doesn’t always feel like my unique perspective is a choice, though.

Every little thing, and every big thing too, seems to have a different impact and meaning for a family like ours. Decisions that are important for everyone, like the school district where you live or the type of vehicle you drive, come with an entirely extra set of considerations for us.

In any situation, my brain defaults to what things will mean for Gage, and then how those choices will affect his little brother. And if I don’t automatically consider those things first, I’m flooded with guilt for neglecting to do so. I want to see past my own little world—my feelings, my family, my kids—but more often than not, it’s what consumes my thoughts.

Lately, it seems like my own little world has shrank significantly. Where will my focus lie when I’m confined to the walls of my home? Not surprisingly, I still have a narrowed perspective. I’m less worried about running out of toilet paper and more concerned with being able to fill prescriptions for seizure meds. I think about how we’ve spent the last five years trying to have as “normal” of a life as possible, intentionally saying yes to things, even when saying no is easier. And now we’re quickly reversing course, being extra cautious. It won’t be like this forever, but it is for now. For the time being, we’ll make extreme choices (or have them made for us) and say no, and do so without guilt or apology.

“Normal” may seem like a distant memory for many people right now.  But I believe we will get to the other side of this eventually. Even that time in the future might be a new normal, with some major shifts in behavior and lasting impacts. I’m hopeful it will still include choosing to say yes and reconnecting with friends we haven’t seen in far too long. Special needs parenting is isolating enough. Connections and shared understanding have to be sought out.

What I do know is that we need each other. We’re not meant to do this alone. I’ve got to see past my own little world, because those connections are worth it. Considering how things affect more than just me and my family is equally important. The isolation that’s all too real must be combated with feeling seen and known, even if that’s only virtually. Maybe in the best case scenario, this crazy experience will bring us closer together, even as we’re separated physically.

 

I’ve realized for awhile that I nearly never live in moments of silence. There seems to be ongoing noise in every single environment. The radio is playing, I’m having a conversation with a three year old, or my inner dialogue just never quits.

The “noise” is not unwelcome. I love music and I especially enjoy chats with Caleb these days. But I wonder sometimes if I’m a little afraid of the silence. Quiet times are the moments when my inner dialogue goes into overdrive and allows all the thoughts, pleasant or otherwise, to come flooding in. Worries about what’s coming next, what if scenarios regarding treatment options or the next best decision for Gage. Feelings of melancholy that may be easy to suppress if I just play a song and sing along instead of leaving space for silence.

Noise, in whatever form, is a distraction from things that are hard to think or talk about, or just plain hard to feel. But even as I put these words into writing, I realize the value in quieting the noise. Sometimes I need to feel the hard things, think about the hypotheticals, and just process all the things instead of suppressing them, burying them under more noise.

What I really crave is an inner peace…calm…quiet. Honestly, it’s hard to imagine what that would feel like. True silence. To quiet the noise both outside and within.

Last weekend we took friends up on their extremely generous offer to watch our boys overnight and Evan and I had a quick getaway to Kansas City. It was so nice to see friends there we hadn’t visited in years. We ate, drank and laughed hysterically playing board games. Needless to say, we both enjoyed ourselves and were glad we went.

Preparing to go had me full of anxiety, but I thought it would be a nice little test run before we stay gone more than one night to celebrate our anniversary this month. All in all, it was a success with no issues while we were gone. The days before we left, as I made notes about medication and thought through routines, it seemed like a lot. Maybe too much for our friends who have 3 busy boys of their own, with basketball games and birthday parties to attend on the day we’d be gone.

But I was reassured it was fine. At the end of the weekend, that same reassurance was there, my friend insisting it was “no big deal.” I looked her in the eye and said while it might not seem like a big deal to her, it was, in fact, a very big deal. For someone to go out of their way and offer us help, expecting nothing in return, is a very big deal. We’re so lucky to have people in our lives willing to offer that kind of help. Believe me, it is deeply appreciated.

The thing that surprised me the most while we were gone was just how much I missed my boys. We were only away for one night, but they were the first thing I thought of when I woke up the next morning. I actually awoke in the middle of a bizarre dream about bringing along my (nonexistent) puppy for the trip and then forgetting it was packed in the car the whole time! Some strange subconscious mom guilt or something.

I remember years ago having Gage’s newborn photo shoot and the photographer was telling me about a trip to Hawaii she had planned. She just wasn’t sure she’d be able to make it on the trip for fear she’d miss her daughter too much. I remember thinking she was crazy. I just couldn’t wrap my mind around being distracted by anything while relaxing in paradise. It all makes sense now.

Now days, getting away takes a lot more thought and preparation than it did when we were younger and more spontaneous. I still enjoy traveling, but the emotions and anxiety that seem to come along with it are a big change that I’m still getting used to. Regardless, I think it’s worthwhile and I’m so grateful for the chances we have to sneak away from time to time.