The light filtered in through the curtains. Slowly I opened my eyes as the baby monitor crackled and coughed its static-filled morning song. A baby monitor is generally outgrown at age two, but for us, it’s the life-line to our 9-year-old son, Calvin.

 I could hear him struggling to breathe, his lungs needing help after a night of stillness. I skipped down the stairs, started the coffee and headed into his room. His wide smiles let me know he heard me coming.

 I scooped him into my arms, all stiff-limbs and fifty pounds of preciousness. Some days I just miss the normalcy of life. Some days I pretend we’re just like anybody else. Like this morning.

 I took him up to my room with me and played a silent rebellion against the litany of medications waiting to be given, the nurse scheduled to arrive in an hour and respiratory treatments waiting to be done.

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Today I just wanted my son.

I let the light stream in on his face and pulled out a book and read. Maybe it was my voice or just the closeness of being held, or maybe it was the humor in the book—I could see his whole body responding with joy.

 His legs shook and vibrated, while his arms attempted to swing upwards. His mouth opened wide with delight and his eyes danced. Joy that cannot be measured.

 These are the moments I count.

 When the IEP results come back year after year and no milestones have been met? I toss them because I know there’s growth that simply can’t be measured by physical achievements. There are treasures and growth that can never be put on paper.

 So when defeat whispers at the edges of my heart while I watch his body struggle and twist from the effects of severe disability, I repeat to myself, “So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day” 2 Corinthians 4:16.

These are things that cannot be measured but they are real and lasting and eternal.

 We have hope outside of milestones. Not only do we have moments of unspeakable joy, we also have an eternal reality that colors every weak moment with an undefeatable hope in Christ.

Kara Dedert writes about the good, gritty, gracey parts of faith, family and home. One of her five children has severe disabilities from Zika. Follow her at www.karadedert.com and Facebook.

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Source: Special Needs Parenting- Key Ministry

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