When You Feel Like You’re Stuck in Traffic as a Special Needs Parent
The other day I was driving along, and then all of a sudden I saw the brake lights illuminate on the cars in front of me. I slowed to a stop. This is not what I planned for at all. I’m not prepared for this. I thought I did everything right and left the house with ample time, but I guess not. To be honest, I was angry.
I started to feel anxious and wondered when we’d start moving again. I worried about being late to my destination. I tried to look ahead to determine what the holdup was, but I couldn’t see past the truck in front of me. Great, absolutely no idea what is up ahead or how long this will take. I kept seeing the minutes get added to the estimated arrival time on my GPS. I was frustrated, worried, anxious and angry, and there was nothing I could do to make the traffic move along any faster.
I was anxious over something I had absolutely no control over. My air conditioning wasn’t working, and of course it was a sweltering 85 degrees and sunny with barely a breeze. I rolled the windows down and tried to cool off. My shirt was wet with sweat, and I was stuck. I can’t turn around. I can’t do anything but inch forward. I looked over at the cars moving swiftly in the other direction. I was jealous — so jealous they were driving along without a worry. For fleeting moments, I wished I was them.
When I sat in that traffic, I realized those feelings are exactly what it felt like when we received the diagnosis for our son. I felt stuck. Sweaty, anxious, worried and angry.
I had no idea what was up ahead of us, and I had not one option to turn around. In our neurologist’s office I heard the words “rare,” “life-threatening,” “unknown,” and I didn’t want to be in the driver’s seat. I so wanted it to be smooth sailing, like the other parents I knew.
Our son has a rare metabolic condition, one that affects nearly every body system. He’s monitored by 14 specialists with therapy every day of the week. He’s medically complex to say the least. He’s tube-fed, failure to thrive, global developmentally delayed, has hearing loss, kidney abnormalities, liver disease and progressive atrophy to his cerebellum, to name a few diagnoses. His two and a half years of life have been anything but the fast lane.
As time went on in the traffic jam, I started to relax. I look around and noticed the beautiful architecture and the shapes of the buildings. The wildflowers in the ditch are absolutely breathtaking. Even the sun beating down on me makes me close my eyes and thank God for this moment. I turned the radio up a little louder and sang along. I caught the eye of the driver next to me, and we just laughed as I was caught singing karaoke in my car.
I slowly inched toward my destination. I know I’ll arrive… eventually. Raising a child with special needs will have a lot of road blocks and unexpected stops, but we’ll get there when we get there. We will find beauty and joy. In our house, we live by the motto “no expectations, just celebrations.” Our son cannot sit unassisted or bear weight for more than a second, and I’m exasperated trying to get him over the 21-pound mark. But we won’t stop — we’ll keep moving forward. Arriving at our destinations may be much slower with added frustration and worry, but there will also be tremendous celebration upon our arrival.
I still glanced over at the cars moving in the other direction, but then I realized their destinations are not mine.
They are not going where I’m going.
It’s not always going to be traffic, and it’s not always going to be smooth sailing. One thing I’ve learned is that you must keep going. Whether it is inches or miles. Just keep going and know this is your journey. It’s up to you to find joy where you can because there are definitely going to be accidents and holdups.
The cars on the other side of the freeway are still appealing, but I don’t want to go where they’re going. I want to be in the driver’s seat on my journey, not a passenger on theirs.
Follow this journey on Team Christopher S.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.