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.
For more information and support:
When Waiting Is The Only Option
Special Needs Motherhood Is Lonely Work
Does My Child Really Need All These Therapies, Interventions and Treatments?
Shawna Wingert is a former training and development professional turned education specialist, and has homeschooled her two children for the last ten years.Shawna has written four books about homeschooling unique learners and has been featured in homeschooling discussions on Today.com, The Mighty, Simple Homeschool, My Little Poppies and Raising Lifelong Leaners.
You can find her online here at DifferentByDesignLearning.com.
This. I live in my own head, every day, wondering if I’m in denial about the future of my girl. I think she’s capable of more, of living a more fulfilled life. But am I pushing too hard? When is it just too much and where do we give up? This life is not what I would have chosen for any of us and it’s HARD. Trying to remember to choose joy and lean into Jesus on the hard days.
Amen and amen, Kris. Thank you for sharing. ?
You know how sometimes you read a post where you want to comment/reply all of the following:
God will carry you through this
I understand “hard” and God’s faithful
I’m so sorry this is your hard right now
You’re doing a great job at Momming
all wrapped up in a short comment that leaves the blog writer feel encouraged, heard, like they’re contributing something very meaningful to many people’s days…
I pray that you hear this comment the way I’m meaning and feel the arms of God under you in a tangible way today.
I do hear it…and needed the sweet encouragement. Thank you so much, Ann. ❤️
Hang in there. The hardest part about mental illness and children is they really can’t tell us how bad it is. I don’t think it is possible to be a mom without having hope. Having hope and living in denial are not the same thing. Sometimes things take a bad turn for the worse. The truth is most medical professionals also don’t know a lot about how to help children because not enough research has been done on the topic. Keep believing in yourself and your child and that he does have a future. “For I know the thoughts I have towards you, thoughts of peace and not of evil, plans to give you a future and a hope”
Thank you for sharing truth that affects all that have special needs children. Our hope is in Christ that gives us daily strength. He is our hope. Cling to the truth and hold hope for yourself and your child. Yes, our path is hard because our children hurt and we feel so helpless. I pray we all choose hope and joy even in the darkness. You are loved and hugged!
We’ve just started two of my kids on meds for some of their medical conditions, and I’m struggling because side effects are starting to be evident, but I can’t really know how the kids are doing. One says he feels better, one says she feels worse, but sometimes he seems worse, and sometimes she seems better, so I don’t really know. So, I do understand the hope/denial conundrum, and I am very grateful to you for writing about it.
I share in this struggle. My daughter has been going downhill for months. I keep hoping we will find answers and be able to restore her to health. Hope, is better than giving in to Fear though. So I rely on the Lord for His Grace and keep hoping in her healing.
Thank you for this post. As I read this, my heart constricted and I got a lump in my throat. I did not realize it until I saw your words that this too, is how I live. I feel constant overwhelm, yet I still hope. Without the flickering flame of hope that God keeps alive, I would be totally lost. Your honest words have brought me comfort. Thank you for sharing your heart. It is truly encouraging. I am sorry your are experiencing this, however, your purpose in living out your faith is a witness of where our strength comes- “I lift my eyes unto the hills, Where does my help come from? My help comes from the Lord, maker of heaven and earth” (Psalm 121).
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