Living In Fear When Your Child Has Special Needs – We know what can happen. We’ve seen the trauma.
Last night, just as the sun was setting, my son had an idea.
“Let’s build a fire outside and just relax.”
His enthusiasm was contagious. Although this is typically something I would not do until my husband was home (he is officially in charge of all things outdoorsy and fire-y), the sight of now both of my sons, jumping up and down with excitement, made me brave.
It was dark already. We worked quickly and the fire soon flickered light across our patio. It began to warm the crisp night.
It was beautiful.
It was a moment in their childhood, in my motherhood, that made me want to freeze time. And, it pains me to admit, I almost missed it completely.
As I sat down with my children last night, I was surprised to find that I was holding my breath. I realized I was waiting for something bad to happen. I was anticipating something going wrong. Even worse, when nothing did, rather than embracing the moment, I found myself withholding, not wanting to enjoy it too much. Afraid, that it wouldn’t last and that things would quickly go bad again.
I almost missed out on a peaceful, sweet moment in my life as a mom, because I just couldn’t allow myself to accept the good. I felt like I couldn’t allow myself the sweetness of the moment, because I was dreading what feels like an inevitable grief, that is lurking just around the corner. It’s part of this – living in fear when your child has special needs.
Living In Fear When Your Child Has Special Needs
We come by this honestly.
Medical traumas, legal battles.
The horror of school aides, teachers and special needs classrooms on the nightly news.
A boy with autism, melting down and shot by police in front of his momma.
The reality that there may not be anyone able to care for my children when I’m gone.
The pit of my stomach when I think about what will happen when my son is 18 and not able to control an outburst.
The domestic violence laws that require an arrest first, without a glance at diagnoses or mental health.
Of course we live in fear.
The Fear Of The Next Bad Thing: Mothering A Child With Special Needs
Just a few years ago, it felt like my son was slipping away from us. Our days were a haze of meltdowns, violence, self-injury and fear. We lived every single day in anticipation of the next trauma. It was exhausting. It was terrifying. It was out of control.
By the grace of God, those days have been behind us for a good year or so. My son is now doing well. We may have glimpses of those dark days every now and then, but never as bad as it was.
And yet, I find myself still anticipating, still bracing myself for whatever is next.
I know part of it is hyperviligence and the very real PTSD than can come from mothering a child with these types of needs.
But there is another part of my heart in all of this that is harder to explain.
This part has a new shirt hanging in the closet for months, because she wants to “save it” just in case she needs it for something more important than today.
This part of my heart saves the good wine glasses for special occasions that never seem to actually happen, as if the delight I find in sitting around with my friends while our children play isn’t occasion enough to be celebrated.
This part of my heart believes that right now is not quite good enough. Worse yet, it has created an anxiety in me that is difficult to identify and even harder to shake.
I find myself unable to embrace the good that is right in front of me, because I fear it will slip away.
So many of my prayers have been answered. And yet, instead of rejoicing, I recoil. I live my life in fear.
I am learning first hand that self-preservation never incites joy.
How sad. How counterproductive. How unlike the mother, wife and friend I want to be.
All of this hit me last night in front of that fire, the light dancing across my sons’ faces.
So much good, right before me.
So many moments to embrace.
So much sacred in my everyday.
With the realization, I let out a long breath that I hadn’t even realized I had been holding in.
I un-clenched the hands I had been unaware were balled into fists.
I let go, for just a few minutes, of all the worries, the anxiety and the what-if’s.
And I surrendered, smiling at those sweet boys, my greatest gifts.
Grateful for an everyday moment, lived well by simply breathing, accepting, helping where we can, and then letting go.
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