As I drove to work this morning I was venting my frustrations over speaker phone to Ike and something he said hit me. As I named off thing by thing that explained my lack of patience and aggravation, he said that I was like the Cleveland Browns. I was 0 in 16 and what I needed was a victory. And in a small, helpless voice, I responded and said “but I can’t control a win.” And at that moment I realized it, the hardest part of this journey, the part that makes it so incredibly draining, heart wrenching, and depleting, is the powerlessness that I feel as I look up at all of our looming mountains.
As I walked across campus to work, I saw students hurrying to class and I remembered that fresh, college student feeling. That space where I knew that if I just worked hard enough, I could earn the A, win the approval of my professors and inch closer to my degrees. What I did felt like it was moving me in a positive direction and the effort I put into my work was reflected in incremental little victories at the end of each semester when my grades were posted, and credits were earned.
Almost a decade after earning my graduate degree, and the space I find myself now, three children later, deeper into my career and launched into the world of special needs, leaves me feeling more like a hamster on a wheel, with my cheese withheld.
What I have learned so far on this journey has been that hard work doesn’t always pay off, determination and enthusiasm, while admirable, won’t persuade my husband’s employer to expand their insurance coverage. A really strongly worded, and passionately written email won’t motivate the insurance representative to help me any faster or with any more accuracy. And a letter to my local county commissioners elicits a stock response, and no further funding for education.
I have become acquainted with realizing that I can’t really control any of this. It’s been a hard lesson to learn but I believe that I’ve gotten it. However, what’s a tougher pill to swallow is that the work and passion that I put in doesn’t move the needle very far. And often I’m left feeling like I’m losing ground and working backwards. The more vocal I am about things, the more toes are stepped on and the more isolated I feel.
When I zoom back into our microcosm, I do not neglect celebrating the inchstones, as many special needs families have grown to do. Cart wheels when I hear a new word, back flips for a sentence, and fanfare when I realize that we can partake in something normal as a family. I relish in those moments, savor and soak them up, and they are the victories that matter most. Yet, as there is always a yet, I am often struck with this powerful feeling of smallness.
As I was getting ready to head to bed last night with that same familiar feeling of exhaustion and discouragement, I heard crying from one of the kids rooms. At first I thought it was Mark because he’d been sick but then realized it was coming from Jillian’s corner. She couldn’t sleep because she was thinking and rethinking about her field trip to Children’s Village. This was a trip that she had been dreading because of the content. They would be talking for hours about fire safety, and my poor, sweet girl has developed an intense fear of fire, to the point of tears during birthday parties when the candles were lit, so I knew that this field trip was going to be a tough one. She had chatted on our way home about making the practice 911 call, stop drop and roll, and some of the other activities of the day, and I felt proud of her that she had made it through. But what I didn’t realize until I heard her crying in her room in the dark was that she needed to debrief from her day. She needed to talk through the scary parts, to slow down, and walk me through what she was up against. We laid together, and I listened as she told me how she shook while she made the practice call, the feelings she had in her tummy when she walked through the burned building and how she just wanted it all to be over.
So even though it seemed like she made it through with her chin up, she was powerlessly shaking in her boots. And I get it, as I am shaking in mine.
I may complain about our insurance struggles, or about the need for more local special ed resources but what I meet in the dark at the end of the day is the fact that this is our reality. I have a son who’s five years old and can’t tell me how he feels, or how his day was, or what scares him. A son whose room is always clean, with no photos or pictures tacked up to a bulletin board, and no notes or treasures hidden under the bed. No little clues like I find in Jillian’s room. No fights about Halloween costumes or what to pack in his lunch. A son whose thoughts are far away and off limits. A person who lives in my house but feels a million miles away. Someone that I miss deeply, but is right in front of me.
And so as I laid in my daughter’s bed, as she recounted her fearful day, I shared her heavy feelings of smallness, and I understood them, more than she will ever know.