The sun was shining down as I pulled up to the Chick-fil-A drive thru line. We waited in line, because well, let’s be honest, the line at Chick-fil-A always seems to wrap around the building regardless of the hour. My boy, happily playing in the backseat, quickly looked over to the play area. As I caught a glimpse of him studying the tall, exciting playset through the window, my heart sank. I knew with certainty what was coming next. Almost immediately, he asked to get out and go play with the other kids. And like so many times before, I had to tell him “not this time,” despite knowing there would likely never be another time. At 5 years old and 45 lbs, squeezing his body and mine into those tiny plastic tubes is virtually impossible and physically exhausting, much less any fun. And so we watched from our car as cute little kids popped in and out of the playset with ease, laughing and just being, well kids.
Sadly, this isn’t a rare occurrence for us (I won’t start on how many things are not handicap accessible) and that’s probably why I never heard a single protest from the backseat. He’s used to his longings to play being answered with a “no” and as his mama, that kills me.
If I’m honest, it can be challenging not to seethe with envy in moments like these. It’s not that I wish the other kids couldn’t do certain things, but that my kid could do them too. And so my heart grieves. And if you’re a special need parent, your heart grieves much the same way.
There’s a unique type of grief that exists within the special needs parenting community. It’s a grief that is marked by repeated, recurring loss. It’s elusive and hard to pinpoint. It can be coupled with trauma in the medically complex. It is often found in the desire to be normal while being profoundly aware of your less than normal circumstances. It catches you in the mundane, when you’re shuffling from therapies or doctors appointments.
The grief of a special needs parent is paradoxical by nature because it marries the despair of lost dreams, the hardships of daily life and the emotional pain of watching your child endure to the joy you have for your child’s life, the love that you have for them just the way they are and the happiness that you were chosen to be their parent.
Some days you’ll seem to have discovered all there is to mourn. You’ll stand bold and confident, knowing you’re a stronger person because you’ve made through the losses and discovered the beauty beyond the pain. Other times, you’ll stumble upon a lost dream or maybe a whole collection of lost dreams, and be completely overwhelmed with sadness and despair.
This type of grief requires a lot of time to process, but spare time is a luxury not afforded to special needs parents. However, just as the many who’ve gone before us, we travel the dark tunnel despite not knowing what lies ahead. We advocate and fight for whatever our child needs despite our weariness. We connect with other families and draw from their experiences despite knowing that no two children are the same. And in spite of all our griefs, we somehow find our will to survive this beautifully complicated and bittersweet life that is special needs parenting.