As I held little Mia’s hands, she cautiously navigated the playground, exuding more confidence than ever before. Yet, despite her determination, her struggle with balance, muscle strength, and coordination still prevents her from walking unaided. This concern weighs heavily on my husband and me every single day. Approaching 2 1/2 years old, she should be exploring her toys, racing with other toddlers to the swings, and scaling the climbing wall without needing assistance.
On the playground, my husband and I squeeze ourselves through metal obstacles, helping her reach the areas she finds engaging. I often find myself longing for the ease of parents who can relax on the sidelines, watching their children play while scrolling on their phones. The allure of having a fully mobile child is always just out of reach.
For us, the burden feels immense, but for Mia, she’s simply enjoying herself. At this stage, she doesn’t comprehend her delays. Her beaming smile reassures us not to dwell on our worries.
Mia was born prematurely, which contributed to her low muscle tone. Her body wasn’t fully prepared for life outside the womb, but she demonstrated remarkable resilience by learning to bottle-feed and breathe independently. However, she faces additional health challenges that threaten her independence. Diagnosed with arthrogryposis multiplex congenita, many of her joints were stiff at birth. To help her regain mobility, her limbs require extensive therapy, manipulation, and exercise.
From her first day in the NICU, we were given hope that she would thrive. Her joints would eventually loosen, but we took it upon ourselves to ensure this prognosis came to fruition. With the guidance of physical therapists, we diligently stretched her tiny joints, often during diaper changes when nurses were too busy to assist. Late nights were spent at her bedside, worrying about her muscles tightening again as we fought our own exhaustion.
As her therapies evolved, we adapted to her progress. During her leg casting to correct clubfoot, we shifted our focus to her arms while her legs remained immobilized. We couldn’t practice standing or bouncing her, which made us anxious about her leg development. After enduring eight weeks of casting, we eagerly awaited the moment her legs could be free. However, I was disheartened to discover how weak they were, having not developed the muscle strength typical for most infants.
Now, each night, we find ourselves physically and emotionally drained, shuffling beside her as we facilitate her progress. While others praise her advancements, we often feel overwhelmed by the relentless demands of her therapy routine. We push aside our fears about her ability to keep pace with her peers and strive to create a joyful environment for her, even when we feel the weight of fatigue and anxiety.
We keep our worries in check, knowing that it’s our responsibility to nurture her happiness. Mia deserves a blissful childhood filled with laughter and joy. When progress feels as slow as ketchup stuck in the bottom of a bottle, we occasionally take a step back to recognize her small triumphs.
At the playground, she surprised me by letting go of my hand, wobbling but regaining her balance. She expressed a desire to stand on her own when I tried to hold her. Inspired by the other children racing around, she resolved to join them in her own unique way, all while wearing a bright smile.
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Summary
In the journey of parenting a child with developmental delays, the emotional and physical challenges can be overwhelming. As Mia approaches her second birthday, her struggle to walk independently weighs heavily on her parents, yet her joyful spirit shines through. With dedication to therapy and support, they navigate this path, celebrating every small achievement along the way.