"What Do You Mean There Is A Problem With My Child"

“What do you mean there is a problem with my child?”

In some ways the parent who refuses to acknowledge their child’s special needs is harder to help than the person who blames themselves or God or the devil for the reality they are facing (see the previous articles in this series for all of these responses). Sometimes it is hard to know what to do or to say even when you have been there yourself, even when you too have wanted to deny this reality.

As a society we have become much better at giving people with special needs dignity and respect. We don’t tolerate language or statements about people with special needs that were commonplace when I was in school. All of this is a step in the right direction, but sometimes I wonder if in our desire to do better, we haven’t also made a serious mistake.

Have we made it too hard to acknowledge brokenness?

I feel for the parent who does not want to acknowledge that their child has “special needs”. I have been there. It feels like a betrayal or failure. It dashes hopes and dreams, makes us feel like we are somehow less and means admitting that we are not really in control. Even more, I feel for the child who will not get the help they so desperately need until their parents acknowledge the truth. When a parent refuses to see that their child needs help like therapy or to be in a special needs classroom, they (usually inadvertently) hurt their child. When we are so afraid of offending that we do not speak up to actually help, are we being kind?

Compassion demands that we tell the truth. No, we should not be brutal or mean spirited about it. Yes, some people delight in telling the truth to inflict pain. But we do not abandon the truth because some abuse it. Healing can’t happen until the truth is seen. Our children with special needs are broken. But that is only a part of the story.

In the Hebrew and Christian Bibles, Genesis 1 and 2 tell the story of creation. God creates a glorious universe, a world teaming with beauty and life. We are told in Genesis 1:27 that God creates human beings – male and female – in His image! He declares all creation good and places humans in the middle of a garden. He gives us purpose and companionship. He gives us Himself.

 And we mess it up. Theologians call it “The Fall”. It happens in Genesis 3–pretty much the same page as all of the good stuff that came before. Everything is affected. As one of my professors used to say, “The Fall goes all the way down.” 

The truth is that we are ALL BROKEN.

Not a popular sentiment today. On the one hand, I am encouraged by the almost gut level reaction that people have to someone being called broken. It is right and good to give everyone dignity and respect, no matter who they are, where they come from, what their status or circumstance in life or even their abilities. But that doesn’t mean we cannot or should not acknowledge true brokenness – whether it is our own or the brokenness of others.

Often, we define our entire identity around one aspect of who we are. I am part of the (fill in the blank) community. It is easy to understand why a parent would not want their child’s disability to be the defining feature of their identity. I get it. I myself have resisted being “autism dad” as a writer for well over a decade.

Here’s the truth: I am the father of an autistic child. Nathan is broken. I can’t fix that. The difference between his brokenness and mine? Most of the time I can hide my brokenness to the outside world. He can’t. But that is not the sum total or even the most important part of my identity or his. Being broken is universal, but it is the beginning of the story not the end.

When we realize that everyone is broken, we can – have to – give up the idea that we are better, or worse, than anyone else. We can give up playing pretend. We can stop curating our Facebook/Instagram perfect lives and get real. 

My identity? First and foremost, above, before and through every other aspect of me is found in the fact that I am created in the image of God and redeemed in Christ. That is good news. News beyond any trauma or disability, beyond any one aspect of who we are. And as we will see next time, it points to a better way of understanding suffering.

Kevin O’Brien is a husband, father, ordained minister, writer and volunteer theologian. He holds a Master of Divinity and Master of Theology from Liberty Baptist Theological Seminary where he won the Th.M. award in 1997. He has also done graduate work at the Institute for Christian Studies in Toronto.  Kevin worked as a brand manager on the Bible team at Tyndale House Publishers. During his time at Tyndale he has helped to develop several Bibles and has written articles which have appeared in The Way, the iShine Bible, and the Illustrated Study Bible. He also wrote a series of devotionals for WAYFM’s World’s Biggest Small Group.

Most recently, Kevin wrote an Advent devotional eBook. You can find it here. 

Kevin lives in the far western suburbs of Chicago with his wife, three children, a dog, and a cat. He would prefer to spend his time reading, writing, woodworking and watching the Chicago Blackhawks.

A Note For The Brokenhearted

I keep waiting for it to get easier.  For the sting of this disease to ease.

One of my daughters is a sensitive soul. She feels things deeply. She will skin her knee and just cry so hard about it. (for a day. mmmkay?) And then in the days to come will continue to tell me it hurts, she will wince, guard it, and even weeks later she will point out the mostly healed spot and recount the pain of it. And try to con me into giving her another princess band-aid. I mostly ignore her- count it as drama. Because let’s be honest it partially is, but it is also how she is affected by pain. It really bothers her. And then with the next wound it is the same. Over and over again, she doesn’t seem to get much tougher.

And that is about how I feel about my child having Tuberous Sclerosis. There has been so much grieving with this disease.  I find myself waiting to settle into this being my life. To be content with this reality.  In some ways I have found peace with a lot of things. And in so many other ways the core of my being opposes these struggles head on. It makes me feel conflicted.  I want to walk this out peacefully. To find Joy in the crevices of my broken heart. To let life and love and experience pour out of its cracked places. But that is a hard things to do.

Sometimes I feel like I am the ‘about healed’, hardly visible skinned knee. You know when the scab is gone, but the new skin is just a darker shade? Not obvious to those around. But when I think I should be feeling better, a remembering-pain from the depths of my soul comes rushing forward. 

Time and time again I come back to this. If God cares about me even half as much as I care about my daughter, if he feels the pain of the deep wounds like I feel hers. If he mourns with me like I mourn with her. If he really is the Good God that I think he is, then a few things must be true

1. I am not even slightly alone in my pain. There is a real, powerful God standing with me through all of this.

2. The brokenness of this world was not God’s Plan, but he will work through it.  He has worked through it. He has sent His Son, and someday all the brokenness will be healed. My favorite children’s bible says this about Jesus coming back “Everything sad will come untrue. Even death is going to die! And he will wipe every tear from every eye. Yes, the rescuer will come. Look for him. Watch for him. Wait for him. HE WILL COME! I promise.” Just take a minute and let that wash over your broken heart.

My friends- There is no shame in broken places. Brokenness is the thread that connects us all. There is holiness in standing with each other in these moments.  

Recently a friend shared with me a Japanese art form called Kintsugi. It is where value is still seen in brokenness. And broken pottery is fixed with a gold lacquer. 

The bowl is not useless because of its brokenness. Instead its brokenness is highlighted, seen as a part of its history, part of its beauty.

May these broken places in my life not shatter me. Or render me useless. But instead become a golden bond of character. Of strength. And beauty.

Peace and love to you dear friends as we stand together in the beauty of our broken.

Written by Laurisa Ballew

Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all.  Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood. 

To The Mom Who Is Broken

Sarah couldn’t sleep all night. I heard her come into the bedroom and could see the hint of sunlight coming in from behind our curtains, when I finally heard the gentle rhythm of her breath indicating she was asleep. She was no longer staying awake at night because she was with a child who needed her. She was awake because of her own health struggles. It was going to be another rough day.

 Later in the day, she would greet me in her perpetual state of exhaustion. Sadness and frustration in her eyes as she wished she could do more, be the wife and mom that she always dreamed of being, and make memories together as a family as we did activities together.

 Her brokenness was not a lack of motivation or desire but a reality that stood like a locked door with the life she wanted on the other side.

 A couple years ago, we were visiting with an older couple who had walked this journey of special needs before us. The wife shared that through the process of raising their son, she became broken. Her old self died and she was no longer the same woman that she used to be.

This resonated with Sarah and it may resonate with many of you. At first, I was so close to the pain that it grieved me. I didn’t want to accept the truth of the statement. I didn’t want to let go.

Time has passed and the sentiment still holds true in Sarah’s mind.  However my perspective has changed as I see that while there was a death of her old self, the person she has become is so much more.

It may seem cliché, but to me, the change more resembles that of a caterpillar changing to a butterfly.  When a caterpillar is in its chrysalis, it goes from eating everything in sight and growing, to being dormant for a period of days to weeks. At the end of this time it struggles to finally emerge from its cocoon, unfurl a beautiful set of wings and then launches into a life it could never have imagined as a butterfly.

I once heard the story of a child who watched a butterfly struggle as it was coming out of its chrysalis. The child felt so bad for the butterfly struggling that she tried to help by freeing it of its encasement.

The butterfly was never able to fly and it died. It needed the struggle to build the strength to fly.

 Sarah may never have the strength to do what she did before, and while she is delicate, she has become much more beautiful than before she was broken.

Where are you at? Do you miss who you were and how strong you used to be? Do you, like Sarah, feel like a significant part of you has died and you are no longer the person you once were? Do you feel like you are failing others and at times like you just want to cry?

Be encouraged, in your weakness these struggles are strengthening you. You are beautiful and you are loved.

He heals the brokenhearted and bandages their wounds.

Psalms 147:3

Written by Jonathan McGuire

Jonathan McGuire  is  the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.