What Is The Line Between Denial and Hope For Special Needs Parents?
I ask myself this question all the time – What is the line between denial and hope for special needs parents?
One week, I was telling my son’s doctor how great he was doing.
The next, paramedics were at our house loading my child into an ambulance.
The week after that, I was on the phone with his specialist, trying to sort it all out.
“Have I just been in denial?” I asked, not really certain I wanted to know the answer (because, you know, denial). “All year-long I have been saying that he is not really that bad and that maybe he doesn’t even really need the medication. It seems foolish now.”
“I think we are always a little bit in denial when we have a child so young with a significant illness. You are not the only one,” she replied, trying to let me down easy.
It’s a fine line, I think.
Choosing joy or willful ignorance?
Having faith or not accepting reality?
Hope or denial?
The Line Between Denial and Hope For Special Needs Parents
In the 18 months since my son’s diagnoses, I am 100% certain I have skirted the line between all of these, every single day.
I think we all do this, on some level as parents.
We want to see the good. It is good for our kids and it’s good for our hearts.
But the truth is, in addition to seeing the good, I have been a little too quick to dismiss some very painful realities for my son.
In doing so, I failed to see the warning signs that were all around me, in the slippery slope.
My son spent weeks in his own hell, out of touch with reality and unable to perform even the most basic tasks – most of which would’ve been avoided if I had been honest with myself about how serious his illness actually was/is.
Please hear me when I say, I am not beating myself up. I know I did the very best I could for him. I know that no one, not even the doctors, really knows how to help him right now. I know that denial is a natural coping mechanism for all of us.
Having said that, I also know I want to be better at this. I need to be better at this.
Hope For Special Needs Parents
I never, ever want my son to suffer because of my own inability to cope.
But as I said above, it’s a fine line.
While I want to be well-educated about my son’s illness and needs, I also want to live in a place of expectant hope. I know that given the choice, I want to always choose to see my son’s strengths and progress instead of his weaknesses and faults.
In a world of medicines, interventions and treatments, hope is not always an easy thing to come by. Hope can seem silly at best and futile at worst.
But this side of Heaven, hope is the only way I can see through all of this. It’s the only way I can get out of bed, on the toughest days, and face all of this again. It helps my son, to be sure, and it helps me too.
Hope, even at the expense of denial, is mostly all I’ve got.
My hope is a flickering flame that has weathered wind and storm. Somehow, God will not allow it is be completely blown out. He sustains me. No matter how difficult things become, somewhere deep inside me, He has placed the audacity to hope, the daring to believe that this time, things could be different. It is foolishness to hope in a world of death. And God says He has chosen the things that appear foolish in the eyes of the world to bring His purpose.
This hoping is the exercising of faith.
Katie Davis Majors in Daring to Hope
Today, knowing the odds that are stacked against my son, I choose joy.
Today, even though my sweet boy will most assuredly need special care, I have faith.
Today, I will hope.
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Shawna Wingert is a special education teacher turned educational consultant, and mom of two brilliant boys who have learning differences and special needs.
Shawna has also written four books: Everyday Autism, Special Education at Home, Parenting Chaos, and Homeschooling Your Child With Special Needs. A passionate advocate for individualized education, Shawna is frequently featured on Today.com, Simple Homeschool, Weird Unsocialized Homeschoolers and The Mighty. She can also be found supporting parents online at her own site, DifferentByDesignLearning.com.