Shepherding the heart of my special needs child

Written by Jamie Ake
Published on February 12, 2021

Let me give you a quick tour of my life… I am the mom of a child with special needs who has been diagnosed as medically frail. Like most families in our situation, we are a single-income family, and I am the designated parent who stays home to care for and advocate for her. My life is very busy, and our house is a constant flurry of activity. Even as I am writing this sitting in my dining room, our ten-year-old daughter, Lizzie, is finishing up working at the kitchen table with her occupational therapist, her home healthcare nurse is in the living room catching up on paperwork, the physical therapist is washing her hands in the hall bathroom in preparation for her turn to work with Lizzie, my washer and dryer are chugging away in the laundry room, and the dog is barking in the backyard. I’ve jokingly threatened to have a revolving door installed on the front of the house to help lighten the load of daily doorbell ringing, but I don’t think our HOA would approve of it.

For a number of years after Lizzie was born and the reality of our new “normal” set in, I found myself internally wincing anytime the topic of Jesus healing the lame would come up. I’d find an excuse to quietly step out of the worship center, or I would turn off the Christian radio station when I heard a reference to these miracles. It would conjure up mixed emotions for me. On one hand, it’s comforting to know that Jesus is all-powerful, but I’d also feel really jealous. Jesus healed those people, yet my daughter still sits in her wheelchair every day and will for the rest of her life. There is a daily routine of medications and procedures that have to happen like a precisely choreographed dance, or she will quickly go downhill.

However, one day not too long ago, the Lord graciously spoke to my heart, and it completely changed my perspective on our situation. We were having a family devotional time, and the passage recommended by our devotion book was Mark 2:1-12. It is the story of when Jesus preached in a house in Capernaum and a paralytic’s friends lowered him on a mat through the roof right in front of Jesus. “Oh great,” I was thinking, “here we go again with healing the lame.” However, this time was different. The devotional pointed out that Jesus forgave the man’s sins first before healing him—that this man’s need for the spiritual healing that comes when we place our faith in Christ for the forgiveness of our sins was more important than his need for physical healing. Even though I already knew this in my head, this message in the framework of a lame man being healed sank it down into my heart. Lizzie’s physical healing will come someday, and most likely not on this side of Heaven, but her spiritual status is far more important to the Lord and should be to me, too.

So the question in my mind immediately switched from Why me? to How do I help point my child to Christ? After all, this is her greatest need, even over her special needs. There is no one set answer, but with the Lord’s leading, this is what I have learned so far. It is important for me to model a faithful relationship with the Lord, help my child see and experience a selfless purpose for her existence, and let the Holy Spirit do his work in her life.

Modeling a relationship with the Lord for my child… means that I must have one. I must do more than just claim a saving faith in Christ. I need to spend at least some time with the Lord daily. It’s imperative! I’d love to say that as a pastor’s wife I spend an hour in inductive Bible study every day, but that would be lying. Truthfully, my personal time with the Lord takes all different forms, from reading from a devotional book, to filling out Bible study questions in a workbook, to reading directly out of the Bible, or praying behind the locked bathroom door because that is one of the few places where I am left alone in my house and can think. I also talk to my child about my relationship with the Lord, and I share with her truths that He is teaching me at a level she can understand.

Helping my special needs child understand her purpose…  can be difficult to figure out in the shadow of her considerable physical and mental limitations. One thing that we have discovered for our family is serving others. This is something we can do together, and it reminds us that hardship and need is not synonymous with carrying our family’s last name. Our church and community offer many opportunities to serve others in a variety of ways. Lizzie is able to count and sort, so she loves to help with church food drives and school supply drives. Apart from the church, a couple of times a month I take Lizzie to a local retirement home to play BINGO with some of the residents. They enjoy her company, and Lizzie finds purpose in helping others whose needs are greater than her own.

Allowing the Holy Spirit to do his work in my special needs child’s life…  requires me to trust Him through the process. I wish there were an easy, well-worn path that believers in a similar situation have followed in the past that leads to a special needs child who loves the Lord, desires to follow and serve him, and trusts him fearlessly. But, there just isn’t. What I must do is prayerfully follow the Lord’s leading as I parent her and realize that I cannot control the state of her heart. I don’t want her to grow bitter and resentful in her relationship with the Lord because of her physical limitations, but if this becomes a part her story then I can trust that the Lord is using this to ultimately bring her to himself. I must loosen my grip enough to allow my daughter to follow the path set out before her as a part of her individual spiritual journey.

Life with a special needs child can be demanding to say the least. There are multiple daily aspects to handle so that our day flows well, but even if I fail to check everything off my mental list, I can have confidence that I won’t go wrong if I shepherd her heart well. Honestly, I am still learning how to do this, but I know that if I personally have spent time with the Lord, I have helped my daughter in some way understand that she has a God-ordained function to fulfill, and I have allowed the Holy Spirit to have his way in her heart, then I really haven’t failed at all.

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Jamie Ake

Jamie Ake is part of the ministry duo with husband  Assoc. Pastor David Ake leading The Rooted Marriage, the marriage ministry here at Stonebriar Community Church. They are the parents of two precious daughters, one with medically complex special needs. When Jamie is not serving alongside her husband, spending time with women in her ministry, or taking care of her family, she enjoys taking a nap because she can.

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