Author: Jacqi Kambish
Life always seems to move in cycles of intertwined seasons.
“A misty winter brings a pleasant spring, a pleasant winter brings a misty spring”-Irish Proverb
The ebb and flow of laughter, pain, anger, loss, hardship, joy, love…it weaves us into the tapestries that we are—complex and colorful.
As a parent of a child with special needs, there is a sorrow too deep to voice and at the same time a thriving hope and optimism that runs parallel to the difficulty of watching my child struggle. The beauty and pain of my soul’s winter season is a complex entanglement, where icy blues are folded into joyful pops of bright spring colors. Even as my heart breaks, hope and happiness burst through.
There are everyday reminders: The number of the hospital saved in my phone, the seizure log my daughter packs for school, and the medications with their side effects. She wants to climb the playground equipment, ride a bike, and swim but it’s complicated. Each day is marked with exceptional difficulty and challenge.
My daughter is 8 years old and has Epilepsy, ADHD, and learning disabilities. Her seizures are uncontrolled, and every day I watch as she struggles as medication after medication remains ineffective. I watch as she tries to understand and control her emotions. I watch as her mind gives up and begins to seize when presented with difficulty and stress. I watch as she cries and laments the difficulty of school as she becomes frustrated with her inability to engage in all the activities she wants to pursue.
I’ve read, researched, and studied. I’ve pleaded with God to give us a cure, to find something that works for her. And yet…the struggle remains.
As I watch, my emotions range from anger to sorrow, to helplessness, to hope, to perseverance, to acceptance, to positivity, encouragement, and back around…
But…I watch something else as well.
My daughter, in all her struggle, has the most amazingly sweet and compassionate heart. She sees people. She wants people to be happy and is deeply saddened by their pain. She prays for the “bad people in the world” because… “They need Jesus too.” When I’m angry that a kid at school hurt her feelings, through tears she asks me for guidance on how to love them better. She ponders that kindness is the best response and laments at how difficult kindness can be. She amazes me.
I don’t know why God hasn’t healed my daughter yet. I don’t know why she has to struggle so much. I don’t know why he gave her to me when I am so fallen and struggle so often to control my own emotions.
At times when my heart cries out “WHY?” God softly reminds me that he loves her deeply, that he sees her and that he sees me. He speaks quietly into my heart the understanding and hope that he has a specific plan for her and that her life has a purpose I cannot understand or fathom. When I stop and listen, what God says to the deepest corners and hardest places in my heart is that her pain and difficulty is not for nothing. Her struggle is not pointless, meaningless, or unseen.
Ultimately, his game plan and end goal is for a beautiful child of the King to immerge from the ashes triumphant and victorious in Christ Jesus. What he beckons us both toward is closer relationship with him as he sweetly says, “Lean on Me, trust Me, wait on Me.”
I don’t know what the LORD is doing. I don’t understand it. I don’t like it, but I do believe that He is good. I do believe that He knows what he is doing and that hope, redemption, and goodness will ultimately be revealed. So, in the moments of deep sorrow, fear, and “winter”, I hold tight to hope in Christ and to my belief that God is our defender and the only real source of rest. And, the peace I find as I soak in the rays of God’s truth is as warm and glorious as the first sunny day of spring.
Jacqi Kambish is a Christian mom to three spirited children striving to balance the daily demands of parenting a child with special needs and meeting the needs of typically developing siblings while working full time and writing. She earned a Bachelor’s of Science in Bible Theology and Youth Ministry from William Jessup University. Jacqi lives with her family in the San Juan Mountains of Colorado and enjoys reflectively writing about parenting, faith, and the joys and trials of life while leaving her readers with hope and encouragement. Her blog The Presumptuous Ladybug can be found at http://thepresumptuousladybug.com/ and you can connect with her on Facebook at https://www.facebook.com/thepresumptuousladybug/ .