Accepting A Special Needs Diagnosis
About thirteen years ago, my husband and I went on a rare date to the movies. At the time our girls were toddlers. Although we didn’t know specifics, we knew Rachel, our younger daughter, was facing a special-needs diagnosis. Our suspicion was autism, although at the time I’d convinced myself she would be on the mild end of the spectrum.
While waiting in line for the theater to open, we chatted and people watched. After a few quiet moments, a commotion started in the lobby. The words weren’t clear, but a female voice chattered in loud, indiscernible tones. A moment later, a teen girl ran past us clutching a huge teddy bear to her chest. She squealed a wordless protest while a faithful and patient young lady chased her through the lobby.
My speech-language pathologist brain kicked into assessment mode. The teen with the teddy bear was probably autistic; mostly nonverbal; distressed, but probably because she was trying to make sense of the situation, perhaps the long wait in line. The other young lady was most likely a caregiver hired by the family.
After that clinical moment, another thought hit my brain like a forty-car freeway pileup: This was my future.
I glanced at my husband. His face paled, his eyes went soft, his shoulders slumped. Yep, the same pileup had just hit him.
This was Rachel’s future, our future.
As I processed that massive thought-wreck in my brain, pieces of my imagined future disappeared into thick clouds of impenetrable smoke. Our dreams of traveling when our kids were older. The dream of possibly moving to Scotland or England like we’d discussed that first carefree year we were married. Empty nesting—not likely, or different than we’d thought. Rachel driving, having a wedding, grandchildren, heart-to-heart conversations with her—all of them died, died, died.
Please don’t get me wrong. I am thankful for my children and love them both with a fierceness I never thought possible before I became a mother. But in that moment, our lives changed, at least our perspective of our lives. There were dreams, ideas, plans, and moments that had to be released.
We had to let go.
And we had to accept.
It didn’t happen overnight. I’d say that moment in the theater was when I realized my life was not my own and quite outside of my control. But I definitely did not accept the changes all at once.
The rest has been a long process, which I’m still embracing. Not long after that movie date, my husband’s job moved us to another state. I became very depressed and went to see a counselor. Everything felt outside of my control (because it was). I will never forget one of the best (and hardest) things she told me. In order to embrace the present, I had to say goodbye to the past. We had been focusing on our move, and my depression over saying goodbye to cherished friends and family, but I soon realized I had to say goodbye to more. I still had to let go of the future that I’d dreamed up in my heart.
I wish I could tell you I wrote myself a cute little letter and moved on, happily, joyfully, blissfully. That sounds like a nice idea, doesn’t it? For years, I prayed every single day that God would heal Rachel of her autism, that she would be able to talk, that she would one day wake up healed and whole.
Sometimes I would watch her sleeping and imagine what it would be like if she woke up “normal” the next day. I dreamed about it, hoped for it, craved it. At some point, and I can’t pinpoint when, I finally accepted that God’s plan for Rachel wasn’t mine. She is beautiful the way God chose to make her. Someday, in Heaven, I believe I will meet a whole Rachel and she will finally meet a whole, anxiety-free, sin-free, made-new mother. (Which of those will be the greater miracle?)
But while we are still here on earth, I hold tight to God because He is my hope. And truthfully? I might always struggle to fully embrace God’s plan as my own. At the least, I will continue to face challenges. When my friends’ children graduate, go to college, start jobs, get married, have children… There will always be new things to accept.
While we as moms are constantly working to untangle our emotions along this journey and to trust God, the truth is we might never entirely get over the emotional pain of seeing our children struggle. We will always have something else to let go. We will always have to trust God to take care of our babies, both now and after we’re gone. And, yes, that can make us sad.
But along the way I’ve learned more about God’s grace than I ever would have had we not been in this situation.
In addition to God’s grace, I’ve realized how much I need him. I need him in the same way I need air. We all do, it’s just sometimes the noise of this world drowns out the small voice reminding us of our need.
We need regular time in God’s word. A habit of prayer. A life spent with daily focus on God. This is like healthy food and vitamins—our bodies and souls need nutrition.
This might sound overwhelming. When I see general statements like that, I feel like I’m looking at a mountain from its base. It’s difficult to imagine climbing to the top, but as an ancient philosopher said, every journey begins with a single step. And as another philosophical person has said, the hardest and bravest step is always the next one we’re about to take.
And this is where prayer becomes so important. We must pray for God to give us just enough light for the next step. But in the midst of a busy life, how do we make that happen?
Over the decades of my life, the way I have spent time with God has changed. For years I focused on different reading plans and measured my “success” in progress. Did I managed to check off my reading for the day? Yay me, I get a gold star! And on the days where I missed or fell asleep when reading (which has been often)—then guilt, guilt, and more guilt.
Hmm. Anyone else thinking “This lady is way too type A”?
Yeah, me too. In fact, my perfectionistic approach to this relationship with Jesus has been somewhat of a hindrance. (And as I am learning, my perfectionism is rooted in my own insecurities…more on that in another post.)
Anytime we place perfectionistic and lofty demands on ourselves, we can feel doomed to fail. At least with me, when I felt doomed to fail, I’d avoid. I’d think, I don’t have time to read a full chapter now. I’ll do it later. Then later would never come. If I had simply done a little, each step along the way, the small pieces would have started to add to a bigger whole, and a “wholer” me.
As a mom of a child with special needs, I have learned that my chances for Bible reading and prayer come in small batches. I must grab them while I can.
Furthermore, my sweet friends, I have realized something HUGE that has set me free of so many unreasonable expectations: God isn’t interested in our performance. We don’t get an A in Bible reading each semester. God IS interested in our hearts and He knows we need Him. Yet He’s not grading us. He doesn’t sit on his throne waiting to zap us for failing. No.
Now, while I believe that to be true, I also think God wants us to realize how much we need him every single step of the way. This is the failure that causes us to suffer—not because God is waiting to zap us with an F in Spirituality, but because a life lived without God, in my opinion, is lacking.
God’s word and prayer is where we gain perspective, peace, strength, bravery, and the ability to get up and do it all over again, even after those days where almost every moment has been filled with what I call “autism fits” and visions of a future that is uncertain.
So whether you are facing a diagnosis or some other challenge that rewrites a carefully planned future, there is hope for that future.
I have learned to face the future clinging to God. In His perspective I have been given just enough light for each step I’m on. And though that is challenging, in retrospect, that’s all I have needed.