So Be It

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.” John 9:1-3

rhema1

When Rhema was 2.5 years old, she was diagnosed with a rare epilepsy. (An official autism diagnosis had come a few months earlier).

After the shock wore off, I actually felt a little excited. It seemed that we had found the true culprit in the LKS. This was the reason she wasn’t speaking. Her doctor believed that if we could control the epilepsy with drugs, she would acquire language. (What he failed to mention is that LKS is notoriously hard to treat). He even suggested that she did not have autism – that the aphasia and all the behaviors we were seeing were in fact the result of the seizure disorder.

I dared to believe him. I let myself believe that she just might be cured by a magic anti-seizure pill.

We called family and friends to share the good-bad news. I sent out a prayer alert to people I hadn’t spoken to in years. I was so hopeful. I had dreams of conversations she, my oldest girl, and I would share. It was hard to imagine, but I envisioned her present, with me, those gorgeous eyes gazing into mine. I imagined the clever things she’d say. I imagined learning all about her, her personality, her likes and dislikes.

Weeks later, Brandon and I were watching the news on TV. A story came on about an autism school in Massachusetts. Oddly enough, the three students profiled in the story all had seizure disorders. As I watched the children intently, I realized then that my Rhema would fall into the “severely impacted” and “low-functioning” category. I suddenly realized that we would struggle for a long time.

I choked out, “This seizure diagnosis doesn’t mean that she doesn’t have autism. It just means that she has really bad autism.”

I wept.

That moment, that realization was far more painful for me than when I first heard the words, “Your daughter has autism.”

I rarely cry openly, and so when I do, it tends to alarm my dear husband. I’m not even sure he understood my blubbering through my tears. But I remember him saying, “Let’s pray.” And I remember us sitting together on our old futon beseeching the God of heaven to heal our precious girl. We did not ask for comfort or strength; we just desperately needed her to get better.

 

That was three years ago.

Knowing what I know now… if I could go back to heartbroken me on the futon that night, I would say-

~You’re right, you will struggle for a long time. But this struggle will force you to the One who is sovereign.

~You’re right, you will see miracles.

~But not always like you think. Instead, they will be more significant, more amazing than you could ever imagine.

~Your days as her mother will be the greatest and hardest days of your life.

~Don’t be afraid to follow your instincts, your gut, no matter what doctors or teachers say.

~You will learn to trust and enjoy God, even when your prayers go unanswered… when your circumstances don’t change. That, my dear, is the beautiful faith.

~You will be “low-functioning” at times; and it will crush you over and over again, but will keep you humble.

~You will be “severely impacted” by autism and by a God who teaches you to listen with your heart.

~Her life will be like a song, a sweet devotion…

~Words will come, words will go. But the Word of the Lord stands forever.

 

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30 thoughts on “So Be It

  1. When I was in Nepal, one of the children I had the pleasure of meeting and working with had been diagnosed with LKS. She was the one who’d had the seizure during the session in my room. When they left, her mother made eye contact with me, and beneath her tired gaze, I saw her acceptance. So be it, her eyes said. I remember wishing so hard that there could be a way for me to convey to her your understanding, your spirit. I wanted to tell her that she was not alone, that there are other parents whose children have LKS, who share that experience. All I could do was send out my strongest empathy vibe and hope that she felt it. Love to you, my friend.

  2. You never fail to touch my heart! Always praying for everday miracles for Rhema and all of our kids. Much love to you and your family.

  3. “Her life will be like a song, a sweet devotion…”
    “… and by a God who teaches you to listen with your heart.”

    I am heartbroken for heartbroken you back then and I am taken aback and amazed by present you.
    Your words are so inspirational, so meaningful, so beautiful. I will keep this post by me and reference it over and over … for a lifetime.

    We never know where life takes us. And yours is a sweet devotion.

  4. You have the words.

    Together you and Rhema, Hope and Brandon, are building a powerful testimony; a living testimony to all who know you, all who come here to read and bear witness to your lives and to your faith.

    All are touched.

    Some will be transformed.

    “so that the work of God might be displayed in his life” –

  5. I think I took my child to the exact same doctor (last name begins with D?) who said the exact same thing to me when he was two. “It’s not autism, just LKS.” Then he pushed the anti-seizure drugs. This was 15 years ago. I realized that he really didn’t understand autism at all. I’m sorry he got your hopes up too. It’s been a long road.

    • Hi TCH,

      Yes, we know Dr. D, although he is not my daughter’s primary neuro. Dr. D was very kind and gracious to us when Rhema was in the hospital once. He is the one who finally found a solution (albeit temporary) to Rhema’s LKS. I think he’s a genius when it comes to treating LKS, but you’re right – I’m finding that the neuros don’t really understand autism.

  6. Ohhh those hot tears. I remember a session on our sofa in Chicago after watching a video on autism I’d picked up at the library shortly after a tentative, predictive diagnosis of Reid: the epiphany that Autism is what we were in for. What a great exercise you suggest to go back and see what you’d say to the sofa-you.

    Our awesome Timeless God is not bound by any dimension. He says those things to you now and then and even later if you need them again. Love John 9 as a theme song–Ginny or Sarah or Nicole need to write a song on that one! xo

  7. Well said. I couldn’t say it any better. The Lord has truly been with you and will continue to draw you nearer and nearer. You are truly blessed because you can see his Hand in all and still call him Good.

  8. I too wish I could go back to the me praying on the couch and whisper secrets only learned through trial. I feel for the younger me who was crushed by the realization that my son would always be different. My heart breaks for you because I know how deep that pain can burn. I can’t go back so I go forward. When I see Moms who are new to the diagnosis I gently offer help that I wish I could have had. When Dylan was diagnosed I knew no one who had shared this pain. Now I seek them out because the weight feels lighter when we bear it together, thank you for being part of the team that makes my load lighter.

    BTW I often give moms who are new to this world your blog, your every entry gives me strength, and I know through Christ we can find joy in each trial.

  9. Interestingly, I’ve been having the thoughts recently of wonder just what I had done to force this upon him. I’ve filed through the chapters of my life, reading each nuance, each sentence, each inflection to see if *that* was what I did wrong. I settled on something, but in the end, your words are true.

    We’ve done nothing. Our children have done nothing. All who come in contact with our children will learn everything… if only they listen.

  10. I’ve often thought how amazing it is that your firstborn is named Rhema…her very being is God’s Word beautifully spoken to you and through you to others. Carrie is right; “You have the words.”

    My heart aches for those mothers and fathers sitting on couches; tears steaming as they process the words of doctors spoken to them about the lives of their children. Words like this – specifically in this post – are so necessary for so many. Keep writing girl.

    As I read this post and the comments, the words to the song, “These are the Words I Would Say” by Sidewalk Prophets came to mind. The song is written by a father to a son; but the context that they came to mind was from God to parents everywhere receiving the diagnosis of autism…their lives are taking an unexpected turn and so many feel like they have made some unforgivable “mistake” that has landed them where they currently find themselves…but that is not truth. God has such rich purposes yet to be unfolded:

    “Be strong in the Lord and,
    Never give up hope,
    You’re going to do great things,
    I already know,
    God’s got His hand on you so,
    Don’t live life in fear,
    Forgive and forget,
    But don’t forget why you’re here,
    Take your time and pray,
    These are the words I would say,”

    Love you girl! I pray often for you, your girls and Brandon.

  11. crying at work… thanks.
    i love how you’re learning and growing and able to share it with us. it’s beautiful.
    good to be able to look back and see things differently. we forget how God sees the beginning, middle, and end of things while we only see the present. i guess that’s why we need to trust him.

  12. Pingback: Our Autism Beginnings, Part 2 « Autism In a Word

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