Hope Renewed—Disability Through a God Lens
Your daughter has Velo-cardio Facial Syndrome (VCFS). The report was in. Our daughter had a lifelong disability.
I held onto the words as the unusual gift they were: dreaded relief. Finally, what we’d been waiting two years for: a reason for Rachel’s global delays.
In some ways it was a sentence. Almost a pronouncement of judgment. Yet I shed few tears. I had a task to do, and such a verdict wouldn’t change that.
My job was to provide the best for my daughter. The best therapy. The most love. I had a plan of action, and such a statement wouldn’t detour me.
In fact, now I had direction and could research with more fervor. Discover what conditions to watch for, what other parents have found to be most helpful, what the future would hold.
I could join support groups, quickly explain my daughter’s unusual behaviors (“She has VCFS.”) to those with questioning eyes, and move on.
An Endless Desert
As strange as it sounds, like a beacon in a storm, the diagnosis brought a feeling of security.
But it didn’t bring security.
Race forward a year or so to a revoked diagnosis and a cross-country trip to an autistic treatment center to acquire more “therapeutic tools” (or so I thought). What little comfort her former diagnosis provided had long since dissipated.
And my world was imploding.
The desert stretched endlessly. Rain was nowhere in sight. Flowers had yet to bloom. My parched soul cried for relief.
I had experienced five miscarriages over a ten-year period.
We had three rambunctious boys, ages eight, six, and one, who brought stresses of their own.
We had a daughter who at the age of four couldn’t talk, had just learned to walk, and experienced significant delays in all areas of development.
We had no reason for Rachel’s delays and no roadmap for her future.
And I thought I could handle it all on my own strength.
Misplaced Hope
It was there in the beautiful autumn mountains of Massachusetts that “me-power” and reality collided head on.
Tears traced jagged paths down my cheeks. Words came in sobs as my heart cried out in anguish.
This is my little girl. Why her? Why me? Why us?
I barely choked out my horrible thoughts to a compassionate ear:“I almost wish Rachel had autism because then there would be hope that she could overcome whatever is affecting her development.”
(Please hear my heart, I know parents of children with autism face extremely difficult circumstances and am in no way belittling what they experience. But I had known children who defied their autistic tendencies and diagnoses to live a productive independent life, and these words came from that knowledge and my desperation.)
I was grasping for an answer—any answer.
I wanted directions to how to handle life with a child with special needs. I didn’t care if I had just the Cliff Notes or the entire textbook.
No parenting book addressed it. No five-step process defined a cure, outlined the future, or even presented the next step.
God was out there, I knew, but felt distant.
He had already taken five of my babes to be with Him before I even had time to hold them, and I still prayed. What more did He want from me?
Mired in fear, I couldn’t comprehend how Rachel’s disabilities could be okay. Her future was draped in fog. I desperately needed a reason to hope.
But I was placing my hope in man—in doctors and therapists—and in the strength of my husband and me. I was focusing on what someone could do to provide a cure for Rachel or a 10-step plan for me.
And in so doing, I was missing the hidden beauty waiting to bloom.
I was placing my hope in man. In so doing, I was missing the hidden beauty waiting to bloom. Click To Tweet
New Life
That desperate night a decade ago caused me to pause in my attempt to separate Rachel from her disabilities. It encouraged me to open my eyes to the possibility that she was fine just as she was.
That perhaps there was a purpose in a Rachel who was different from others—who had, not disabilities, but different abilities.
My perspective began to change. Where before stretched parched earth, I now saw life. Where once there were dried petals, glorious flowers burst forth.
I opened to the marvelous possibilities embracing all of Rachel brought.
Maybe God didn’t make a mistake. Maybe He did have His fingerprints all over her life—and mine!
By honoring me as Rachel’s mom, the Lord declared His desire for so much more from me and for me.
By honoring me as Rachel’s mom, the Lord declared His desire for so much more from me AND for me. Click To Tweet
He wanted my heart and my trust. He wanted to lavish His joy on me.
But in my doubt and fear, I could only see heartache.
God wanted my trust. He wanted to lavish His joy on me. But in my doubt & fear, I could only see heartache. Click To Tweet
It wasn’t until I looked from another angle (through a God lens) that joy replaced sorrow, potential replaced limitations, flowers replaced barren ground.
Rachel in her own form of normalcy taught me that God is always love. We just don’t always look in the right places or from the right angle to see his love notes.
God is always love. We just don’t always look in the right places or from the right angle to see his love notes. Click To Tweet
“Sing to Yahweh, you His faithful ones, and praise His holy name. For His anger lasts only a moment, but His favor, a lifetime. Weeping may spend the night, but there is joy in the morning. … You turned my lament into dancing; You removed my sackcloth and clothed me with gladness, so that I can sing to You and not be silent. Lord my God, I will praise You forever” (Psalm 30:4–5, 11–12 HCSB).
Reflections: Are you trying to make it on your own strength? Is there something in your life that would be better viewed through a God lens? Have you made it a point to notice His love notes to you?
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Sorry, this Giveaway has expired, but I’d still love to hear from you. And Katie’s site is still worth a visit! 1/15/2013
Today’s post is inspired by author Katie Ganshert’s debut novel Wildflower’s from Winter, which releases May 8. It is a tale of faith, hope, and love through difficult seasons.
By His grace ≈
Julie
Find hope in your real-life struggles. We'll chase it together! I am a wife; mom of 4 (including a young adult daughter with special needs); miscarriage mom of 5; author & follower of Jesus Christ. I write, edit, speak and enjoy everything outdoors.
I loved your story! I am sharing it with a mom friend who adopted three children with disabilities. She could really use the encouragement!
Thanks, Michelle! I appreciate you taking the time to stop by. I pray the Lord uses this post to bring hope and comfort to your amazing friend. I’d love to encourage her personally if she’d care to connect. Blessings.
I love your comment “Rachel in her own form of normalcy taught me that God is always love. We just don’t look in the right places or from the right angle to see his love notes”. Everyone is born with his/her own form of normalcy…why do we often strive to be like everyone else?
Great question, Jan! When you find the answer, let me know, so I can quit striving!
Love the picture of you two. 🙂 Thanks for sharing your story.
You’re most welcome, Cheryl! Thanks for stopping by.
Wow…Julie.
This is…..just, wow.
Since I’m sort of at a loss for words, I’ll just repeat what you said:
“That perhaps there was a purpose in a Rachel who was different from others—who had, not disabilities, but different abilities.” AMEN!!!
“By honoring me as Rachel’s mom, the Lord declared His desire for so much more from me and for me. He wanted my heart and my trust. He wanted to lavish His joy on me.” AMEN!!!
I think about how “the last shall become first.”
In this world, people with different abilities aren’t always valued like they should be. Sometimes they take “last place”. But you know what? Rachel will be first in heaven. She’ll wear a crown! What a blessing that you get to be her mother. 🙂
Thank you for ministering to me this morning.
I am blessed and honored to be Rachel’s mother, Katie! Yes, I too think Rach will be first in heaven. She is so sweet and fun. Someday you will have to meet her.
I’m grateful God is using my words to minister to you, but He is using you in a profound way to encourage me and lift me up. Infusing me again with purpose and strength to continue pursuing His calling on my life. Blessings, my friend.
Your article was great, and I especially liked the picture of the two of you! Keep writing.
Thanks, Mom. Your words are always encouraging!
This is such a moving story. Those times when we’re honest with God, asking those hard questions, are the times I think He is so near, even when we don’t “feel” it. So thankful God blessed your life with your sweet and lovely daughter!
I’m thankful as well, Heather! And also thankful you stopped in and graced me with your kind words. Blessings!
So touched by this and the beautiful picture of you and your daughter. Thanks for stepping out to encourage others!
Thank you for encouraging me, Julia!
Dear Friend, Great writing! I so long for the days when those “God Lens” are permanent. Love the picture.
Thanks, Dawn! You are an inspiration to me. Permanent God lenses would be awesome–we will finally have them when Jesus welcomes us Home.
Beautiful. A true story of His grace, right there, in the middle. I wish I could reach through the internet and give you a hug! 🙂
Thanks, Natasha, you already have!
I can’t tell you how many times I’ve heard the question “Why me?” coming from my own lips…and it ALWAYS seems to pop out when I’m relying on my own strength. Go figure.
Thank you so much for sharing about your beautiful Rachel, whose name means “lamb of God” or even “ewe.” I’m so glad that He revealed to you how special YOU are by choosing you to be her earthly shepherdess – this is truly what He meant when He told His disciples to tend His flocks. You have a lovely lamb in your fold and He believes in you enough to give her into your care! Wow!
God bless you, sister!
“Why me?” might as well be the first words that pop out of infants’ mouths as much as we all say them through the years. I am humbled to think of how infinitely patient the Lord is with us.
You’ve blessed me with your encouragement today, Becky.
Oh, Julie. This is so, so beautiful. Glorious. Thank you.
You’re very welcome, Natasha. Thank you, and thank Him! 🙂