The Mountain of Special Needs Parenting

by Nov 17, 2021Encouragement, Grief0 comments

3 verses to keep caregivers from falling over the edge of themselves to when the mountain of special needs parenting is steep and narrow.

The mountain of special needs parenting is similar to Heather Johnson’s summer hike in Glacier National Park. In today’s post, she shares three Bible verses that gave her family hope and increased her faith then and now.

In August, my husband Todd and I hiked the Highline trail in Glacier National Park. As the name of the trail implies, the path cut along the side of a mountain and was so narrow near the beginning that a thick wire cable drilled into the rock served as a handrail, lest a misstep cause a trip and tumble over the edge.

Past the narrow path, the grade steepened. I wondered if we’d reach our destination. Though our lungs and legs ached, step-by-step, we made it. Viewing the contour line of far-off mountains, I thought about how far our family has come in 24 years.   

In 1997 and 1999, we adopted our three kids (six, four and nineteen months) from an orphanage on the outskirts of St. Petersburg, Russia. Our hopes were high. So was our naiveté.

Todd and I didn’t know then that all three of our kids had numerous invisible disabilities that would affect all our lives significantly and permanently.

To be honest, my goal for years was simply surviving. But by the grace of God and many loving, generous friends and professionals, we’ve made it this far. Last year, Todd and I became empty nesters.

Yesterday, Anna turned 30. She lives ten minutes from us in a cozy apartment by a creek with a resident manager on site 24/7 to provide for her needs. During the week, she packages nuts and bolts in a sheltered workshop/factory for people with disabilities. Her smile brings joy to all she meets.

Zach (28) and Nick (23) live semi-independently and function fine with helpers who provide supportive scaffolding with finances, problem-solving, judgement, and planning. They both work hard and are happy with their factory jobs.

I look back on our child-raising years and see that the mountain of special needs parenting was like our mountain climb in Glacier. Both were steep and grueling at times. Both caused ache. But God was with us, step-by-step. Sometimes when one must slow because of a narrow and difficult path, one comes to know God more intimately. That’s what happened to me. I needed something/someone stronger than myself to reach my destination and my strength came from God through prayer and His word. Three verses helped anchor me to hope and still do. Maybe these will help anchor you too.

Though he slay me, yet I will trust in him. Job 13:15 KJV

God and I have had many a wrestling match over the years. I’ve cried, screamed, and pounded the ground with my fists. I’ve doubted God is good. I’ve joined the chorus of unbelievers who ask, If God is good, why does He allow so much suffering?

 Perhaps one must wrestle with suffering to answer that question. Job did.

As for me, if suffering is what it takes to bring me closer to God’s heart, to trust God more, to love God, myself, and others more, then I think suffering is a good thing. Never pleasant. But good.

I believe God has allowed suffering in our lives to drill trust deep into our souls, securing us, keeping us from falling over the edge of ourselves.

Give thanks to the Lord, for his is good, for his steadfast love endures forever. Psalm 136:1 ESV

Every day, no matter what, we can give God thanks simply because He is good. Even more, He loves us unconditionally and unendingly forever. Who could ask for more? When life gets tough and we think we want for this or that, I remember that God is all I really want, all I really need. And yet, God gives more.

As I look back, I see how God provided perfectly for our every need—wonderful teachers, tutors, physical therapists, occupational therapists, speech & language therapists, special education teachers, reading tutors, orthopedic and ophthalmology surgeons, psychiatrists, psychologists, cardiologists, case managers, mental health therapists, and prayer warrior friends who never left us in our toughest times. In fact, some of our kids’ caregivers have become my closest friends.

The LORD is my strength and shield. I trust him with all my heart. He helps me, and my heart is filled with joy. I burst out in songs of thanksgiving. Psalm 28:7 NLT

Simply said, I never need to be strong by myself. Neither do you. Not to climb the mountain of special needs parenting. Not to help ourselves. All we need is to lean into the LORD, draw on His strength, shelter behind His shield, trust him, do the next right thing, and give thanks joyfully (sometimes through tears) for all He’s already done. What He’s already done proves what He’ll always do. Our God is our trustworthy Deliverer and Provider, faithful and true.

After all these years, our challenges haven’t changed. But God has championed our challenges and calmed our hearts. We’re at a place where we can see with fresh perspective that our God sees us, hears us, loves us, and never stops providing perfectly for us. He’s doing and will continue to do the same for you. Lean into Him, step-by-step, and breathe. For indeed, come what may, God is good. God is kind. God’s got you and your kids. Just like us. We’ll all make it together with God.

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By Heather Johnson

Heather MacLaren Johnson and her husband have three kids, all five and under when adopted from Russia. Now young adults, all need regular help with their multiple, permanent, invisible disabilities stemming from prenatal exposure to alcohol (FASD).

Heather has B.S. in Education and a doctorate in Clinical Psychology. She is the author of Grace, Truth, & Time: Facilitating Small Groups That Thrive and has published personal essays in The Wonder Years: 40 Women Over 40 on Aging, Faith, Beauty, and Strength (Kregel Publications) and Your Story Matters: Finding, Writing, and Living the Truth of Your Life (NavPress). She’s writing a memoir about her family’s journey through hidden disabilities and mental illness to encourage others to greater intimacy with God and each other through times of desolation and lament.

Heather and her husband of 27 years live with two horses, two dogs, two barn cats, and a bunch of silk plants she just dusts. Heather writes and photographs at www.truelifewithgod.com.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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