This is for the family whose life is not as they expected it would be. It’s for the family:
- who may seem normal from the outside, but on the inside is hurting, lonely, exhausted, confused, stressed, and unsure of the future.
- who lives on eggshells in their home, trying their best to parent a child who constantly demands their attention, energy, and emotions.
- whose expectation for the family they thought they would have has been shattered by the reality of physically and emotionally draining episodes, doctor’s appointments, therapies, diets, and structured days dictated by an attempt to avoid as many issues as possible.
- who wants to help their hurting child, but feels helpless to do so.
- who aches at the negative effects their child has on their other children.
- who feels judged by the looks of others when their child acts out or does something inappropriate.
- who feels anger towards their child for the pain they cause, and then guilt for feeling such anger.
- who wonders if they did something wrong or could have prevented the struggles they face.
- who asks, “Why, Lord?”
This is for the family who has been given the responsibility of raising a child with a behavioral or neurological disorder.
Unlike many diseases, illnesses, and injuries that can be diagnosed, explained, and treated, most behavioral and neurological disorders are complex, unique, and perplexing. Even a diagnosis does little to relieve the drastic impact such disorders can have on the life of a child and his family; leaving many to feel misunderstood and utterly alone.
While you may not have experienced this personally, my hope is that I can encourage those parents who are hurting and feeling alone as they navigate the uncharted waters of special needs. At the same time, I hope to bring awareness to others, that they might be more sensitive to those around them.
If you are a parent with a child with special needs, this is what I’d like you to know.
1. You are not alone.
Yes, others are suffering as you are — feeling afraid, hurt, confused, and broken in the midst of their storm. They too battle disappointment, anger, and sadness for their child and family, simply trying to keep their world from crumbling.
The reality is, there will often be times when we feel alone. Loneliness can either drive us to isolation and self-pity or to Christ, the only place we will find strength, comfort, peace, joy, and firm footing (Psalm 121:3). Grasping this has sustained and carried me through countless painful moments with my child, along with my other children as they wrestle through what they don’t understand.
When I find myself in a heap on the floor, flooded with the painful emotions, I am driven to cry out to Jesus, knowing that he both hears and cares. In that moment, while chaos crashes around me, he is my peace. Often, it is not until later that I look back and see it was his provision, protection, and presence that carried me through.
If you find yourself walking into church, your job, or the grocery store, feeling as though no one can enter into the pain that weighs upon you, let it drive you to God’s word and to prayer. As we remember that Jesus Christ suffered for our sake, proving his love for us at the cross, we will find peace in knowing that he not only knows our pain, but is with us, providing the grace that is needed each day.
Knowing that God is working all things for our good (for those who love him) means we can step out in faith and confidence without needing the approval and complete understanding of those around us.
2. You have hope.
In Christ, there is hope for believers both for today and for eternity where all things will be made right! All tears will be wiped away, and all we have endured with faith and patience will be rewarded in our Savior’s glorious presence. When our hope rests in earthly circumstances or when we dwell on what could be or what could have been, we’ll find ourselves discontent, frustrated, and stressed out. The Lord alone is our unshakable hope, no matter the outcome of our circumstances.
I have learned to trust that if my worst fears come to pass, he will empower me, somehow use it for my good, and glorify himself through it. And should my greatest earthly desires for healing and answers come to pass, it will also be because of his grace, for my good, and for his glory.
Despite how hopeless and discouraging our circumstances may seem, we can trust that Jesus Christ can take what is broken and grieving our hearts, and make it into something beautiful and eternal.
3. You are not defined by disability.
This can be difficult to remember for the parent whose child is labeled out of control, disobedient, disrespectful, aggressive, or “different.” No matter how much I remind myself of this truth, I am often tempted to feel ashamed and embarrassed by my child’s behavior as I am aware of what other people must be assuming about us.
Our security and confidence cannot be defined by our children, parenting, or anything other than who we are in Christ. If you are a Christian, trust that you have been chosen and called to parent this child. If the God who spoke all things into creation ordained this in your life, who else’s opinion should steal the confidence and security you can have in his loving purpose for you?
No, this isn’t easy. We all desire acceptance and approval from others, but we must trust God with what others think. While this will be a lifelong process, we will grow in this confidence as we spend time in the word, fill our minds with what is true, and pray for Christ to help us.
4. You have a unique opportunity.
What changed my perspective on my life, my child, and my family’s struggles is that it’s never been about me. When I dwell on thoughts that reflect the thinking that life is all about my happiness — such as, “My life is so hard. I could do more if I didn’t have this hardship” — I get sucked into despair. But when, by God’s grace, I trust that nothing happens apart from his will and sovereign plan, I am encouraged and strengthened, knowing he is working in, and through, even my darkest days to make me more like him. It is in our darkness that his light shines most brightly to those around us.
His Glory in Your Story
As much as we would like answers and help for the often overwhelming circumstances surrounding our children, we must remember that God himself is the answer that we need in both an earthly and spiritual sense. He knows each member of our family intimately and is working out his good purposes in each of our lives (including our precious children with special needs), often in ways we would never have expected. As we learn to trust Christ and find joy amidst what seems senseless and hopeless to the world around us, we will draw others to the hope of the gospel.
If you have been given the privilege and responsibility of raising a child that has taken you to the end of yourself, I pray that you will be strengthened by remembering that your precious family has been divinely chosen to display God’s glorious redemptive story. Although we aren’t promised healing on this earth, we are promised that Christ will not waste one tear we shed over these painful effects of sin within our world.
You are not hopeless, you are not alone, and you are not defined by your child’s disorder. Rather, you have been called and entrusted to raise a child with special needs for the glory of God. Through the grace of Jesus Christ, he can take and use what seems devastating to drive you to him, mold you to his image, bring unexpected blessing, and display his glory through your life and story.
In Christ, Sarah Walton
To read more on the hope we have in suffering, you can purchase “Hope When It Hurts – 30 Biblical Reflections to Help You Grasp God’s Purpose in Your Suffering” authored by Sarah Walton and Kristen Wetherell here or here.
Post Credit [Desiring God]
9 thoughts on “To Parents With Special Needs”
Thank you so much for this, Sarah. My son has pans/lyme and your words spoke directly to me. It is obvious that you are fully surrendered to God.
Prayers for you and your family.
I’m so sorry to hear what you and your son are going through. It really stretches you beyond what you ever thought possible. Surrendering these things to the Lord is a daily battle, one that I sometimes choose to fully trust him and other days that I allow my emotions to rule. Thankfully, he is a gracious and patient God. Praying for you as well, sister.
Sarah, thank you so much for your blog and your book. I am reading it now and it speaks directly to me. We have twins with PANDAS/PANS, and and I truly can relate. Though we have done much healing with homeopathy the last 5 months, it is still so hard to surrender the control. I also know Jesus wants to work in us and grow us through this situation, so thank you for being that support, for sharing your faith and helping us grow ours.
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Thank you so much for your encouragement, Amy. I’m so sorry to hear about the challenges with Pandas/Pans. It can feel like such a lonely journey! Praying for you right now, sister.
Lovely read, I know at times I feel like I’m on my own even with hubby and family support, Some days are worse than others. our son Bear (Teddie) has complex needs it is so lovely to read how others cope with their struggles, as strange as that sounds.
It doesn’t sound strange at all! I pray that God will continue to strengthen and equip you for the road he has called you down.
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I just found your blog. Many things you write resonate with me. I was actually looking for encouragement for my husband. We have been suffering 10 years with his cancer and now PD. It has him really down.
Our youngest child has special needs and needs full time care.
When I write it all down it looks overwhelming. And some days are dark. But I believe Jesus is with us and His banner over me is love. I look to the cross to know what He thinks of me.
You write of feeling alone, and boy, I know the feeling.
And I’m guilty of just wanting to stay home. Of not wanting to think of the future and hiding out in books or old movies. Of doubting.
But lately I’ve given myself some grace. That I don’t have to fake cheerfulness. It’s ok to grieve. It’s okay that I don’t understand. To be real with God and know ‘He knows’ and He is a loving and trustworthy Father who will never leave me or forsake me.
I ask for His peace that passes understanding. And His strength for another day.
I’ll be back for more of your words of wisdom.
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Wow, what a hard road you are on, Laurie. Praying for you now, sister. He is faithful…even when it’s hard to see the road ahead.