Life can be A LOT.
The whirlwind of daily expectations from others or ourselves can be overwhelming at times. As I’ve grown older, I’ve been better able to appreciate how complex managing a growing family truly is and give myself the grace to not be perfect.
We are all faced with situations that smack us in the face and make us realize “life could be a lot worse!” or, “I should be grateful I don’t have that on my plate.”
When my oldest son was a newborn, it seemed like this happened frequently, and sometimes in drastic fashion. As an infant in the NICU, born at 1 lb, 12 oz, he needed a lot of support to survive. His bedside incubator was a maze of tubes and wires, and constant whooshing and beeping noises reminded us this wasn’t a typical nursery. When he failed several extubation attempts to wean off of a ventilator, we had to accept that we would not only be taking our baby home eventually, but also a slew of medical equipment to keep him alive. Overall, my husband and I spent six months in the hospital with him, and during that time we witnessed devastating situations that reminded us to be grateful for the tubes, wires, and machinery that we dragged everywhere. Tubes meant he could still breath. Beeping machinery meant there were still vitals to monitor.
But the fact that we eventually brought a living, breathing baby home didn’t mean our hurdles were over. We had decided his complicated ventilator setup should be in the living room/kitchen where we spent most of our time, and we wanted him to feel like he was in the middle of the action and not just staring at bedroom walls. It was complicated to move him anywhere, so keeping him in this high-traffic area was important to us. This meant we spent months half-sleeping next to him on a mattress on the floor because he needed to be monitored at night. We couldn’t shower or leave him for more than a minute unless there was someone to watch him. If his lungs needed suctioned or if he moved in a way that sent condensation from his ventilator tubes into his airway, he could aspirate and would need immediate attention to recover. He was even so fragile that fussiness could cause him to pass out and need CPR.
This kind of attention was A LOT.
When I look at my son now (at 16), it’s incredible that I’m seeing the same child who was so tiny he got lost in the blankets in the delivery room. Like all of us, he’s independent in some ways and interdependent in others. My daily stressors are no longer related to keeping him breathing, and instead my focus is keeping him on top of homework, making sure he is advocating for himself, teaching him to stay organized and plan ahead, and encouraging him to consider colleges and different living situations.
It’s still A LOT. Even though it’s different.
And that’s just a small piece of my life now. But this blog post isn’t a personal diary of all the intricacies of my life–I’m hoping it’s a message of solidarity to say I understand we’re all dealing with a lot. I SEE YOU. Trite reminders that things can be worse are definitely true, but they don’t validate the mess now, which is sometimes important. I think it’s okay to be grateful for what we have AND upset about everything being too much.
When I’m told by someone else that it sounds like I’m dealing with a lot, I find that extremely validating. This gives me the space to forgive myself, shake self-doubt, loosen my expectations and embrace the chaos (or at least be more content with it)!
Humbling experiences where we’re reminded that “things can be worse” help broaden perspectives and empathy-which is so important, especially in the politically, culturally, and economically divisive country I am writing from on the eve of a presidential election. But these experiences/reminders don’t invalidate our messy, difficult reality, and we should embrace that new perspective as an opportunity for growth rather than be embarrassed or defensive about our own motives or behaviors. This is especially relevant to developing as an autism advocate or advocate of any kind. Advocates commit to a cycle of learning and continually improving, whether advocating for themselves or those they love.
Stay connected and empathic to those around you without denying yourself grace. We must have grace in order to grow and keep doing better for those around us (on broader, societal scales as well as in the seemingly simple daily interactions with those in our own homes or those who know us best). No one has it all figured out. Not even those who seem like they do.
The holidays are approaching, and that brings a lot of joy, stress, and anxiety. And I like to try and embrace all of those things. This holiday season give yourself the grace to be frustrated, sad, anti-social, exhausted, joyous, grateful, and content all at the same time or in rapid succession. Hopefully we will all have the capacity to embrace the confusion, the oxymoron, the beautiful mess.