Mothers of Children with Special Needs
He says, “Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth” (Psalm 46:10 (NIV)).
This verse began my journey into finding out who Jesus really is when I was 17 years old. It led me to surrender my life to God at 18. It’s my reminder that even when I have no idea what tomorrow holds, I can rest in knowing that God does, my God who breathed the world into existence. The verse that quiets my soul and causes me to praise Jehovah-Jireh – the God who provides. Lately, I’ve been having to remind myself that God is just that — the God who provides. He is faithful and will remain faithful. Even when I worry and try to color-coordinate my entire life, God is still is all-powerful. He is and will always remain in control. In fancier biblical terms, God is omnipotent. There is nothing too big or difficult for Him.
“Then the word of the LORD came to Jeremiah: ‘I am the LORD, the God of all mankind. Is anything too hard for me?’” Jeremiah 32:26-27 (NIV)
If I truly believe that He sustains all of creation, then can He not be at work in my life and in my situation? Being a special needs parent can be lonely. Family and friends don’t understand your life. You’re afraid to befriend anyone new because they might judge your child. The work it takes to explain your child’s needs ends up being harder than not having friends to begin with. You work so hard for people to see the blessing that your child is. But you can’t talk about the struggles because everyone already looks down on your child with autism, fetal alcohol syndrome, ADHD — insert whatever diagnosis he or she has.
This loneliness is difficult. Feelings of shame start to creep in. For me, these feelings only further add to the loneliness. These are the days I meditate on Psalm 46:10. But it is hard to be still amid the chaos of parenting a special needs child. There is no time to be still. Oh, what I would do for a nap! But to break the bonds of isolation and shame, I’m choosing to write this. As a recovering perfectionist, I didn’t want to write this. I like people to like me. I like pleasing people. If others read this, then they might judge me. They will think terrible things of me. They will say how can a Christian woman, a pastor’s wife, a mom, have these thoughts? But I know there are other hurting moms who need to hear that they are not alone, that although we will fight every single day for our children until we move literal mountains for our kids, it’s still tough. There are days you want to scream so loud, days you wish you had off, days when sitting in the car an extra ten minutes in the driveway is your only retreat.
So to the lonely and ashamed momma:
I’ve wanted to run. I’ve wanted to scream. I have screamed. I’ve been angry and jealous. I’ve been so bitter as I see friends’ children excel when I’m struggling to keep my child out of in-patient hospitalization. I’ve watched other moms in their glorious Mother’s Day photos as I sit on the floor of my child’s room trying to deescalate aggressive behaviors. I’ve posted pictures of my family smiling, knowing that five minutes later my son became over-stimulated and banged his head into the wall until I stopped him. I’ve asked God why. I’ve argued with God. I’ve been confused about why God would call my husband and I to adopt a child who would try to physically hurt us almost daily, why being a special needs parent would require so much sacrifice? “I’ve been obedient, Lord. Where’s my happy ending?”
I’ve felt betrayal from friends who left after they said they wouldn’t. I’ve been hurt by people who just don’t understand and think my child’s needs aren’t “really that bad.” I’ve planned out every single minute of my life to try to control the uncontrollable. I’ve felt the heartache of watching my child harm himself. I’ve rejoiced at the small amounts of progress, like going a full 24 hours without having to restrain a tiny body from danger. I’ve had sleepless nights from the fear of what might happen and then been angry and sinned the next day from lack of patience and sleep.
I’ve feared about my child’s future or that he might end up as another statistic. I’ve felt hopeless and begged God for an answer. I’ve pretended that I’ve never felt any of these things. I’ve faked a smile and posted the best Instagram-worthy photo so that others wouldn’t know the struggles of parenting a child with special needs and a mom who feels like she’s failing. Yes, there are days of beautiful joy, days where you wish you could bottle up the happiness and save it for a rainy day. And yes, we love our children unconditionally and will use their testimony to change the world, one blog post at a time. But there are also days when you want to lock yourself in a closet and just forget the world exists. Quite honestly, these days happen a lot. I don’t have all the answers, but I will keep trusting in the Lord.
To the mom sitting in her closet — who can’t actually sit because of the dirty laundry she didn’t have time to do because she’s a momma of a child with special needs — I see you and you are not alone. Not only is my God, Jehovah-Jireh, the God who provides, he is also El Roi, the God who sees. He sees you, my friend.
By: Katie Matthews
Katie Matthews is married to C.J. Matthews, the pastor of Bethany Church Columbia.