The Struggle is Real and It Got the Best of Me

Tonight I lost my cool. The typical resolve that keeps me grounded despite Evelyn’s gross motor delays disappeared. The optimism that usually permeates the house blew out the open window as the warm breeze ushered its way in and out. The cheering and clapping that accompanies her standing up big and taking wildly swaggering steps was silenced by the cries, screams, and full on tantrums from the toddler. Tears of my own quickly followed. Though quieter than hers, the frustration level was the same.

Having a child with physical delays is challenging, at best. The relentless work each night after dinner, the strapping on of her brace shoes (and our best attempts at keeping her from undoing the Velcro) and the constant need to keep our enthusiasm ramped up to level 10–even when it’s realistically a negative three–is draining. Trying to get her to practice walking, when she does not understand why she needs to practice walking, can be nearly impossible. Each night, our brains circle furiously through all the ways we can keep her engaged without her knowing it, and at times its an all out battle of the wits between her and us. I’m tired of the battle.

In a blissfulness I haven’t had in months, two days ago I gleefully ordered Evelyn a new walker toy. With high hopes and a new outlook on the long evening of work, I envisioned Evelyn’s glee to match mine. The clacking alligators cheerfully chomp with each push, each step, each inch closer to her mobility. The bright green animals patiently awaited her movement. At first, her watchful gaze eyed up the box upon delivery, and her impatient cries implored us to hurry up and get the screws in the handle. Hurriedly grabbing the smooth orange handle, she proudly stood. Leaning over to fiddle with the wooden insect beads, she scooted forward. And after two steps, she sat. No encouragement, no peppiness, no amount of applause could coax her back up. She sat. She flung herself backwards. She cried. The lingering effects of a recent bout of strep with a newfound allergic reaction to the antibiotic given to treat her illness no doubt intensified the crabbiness. Itchy hives would do that to the best of us. So we sat. We sighed heavily.

Then my head turned downward.

And I cried. Big, wet, messy tears hit each fiber of the carpet beneath me. No amount of tissue could make them turn off.

Make no mistake, I endeavor each day to keep a finger on the pulse of reality. We are fortunate in countless ways, and she brings a brightness to our little family that no one else could. She completes our household in immeasurable ways. Her wonderful qualities outshine her difficulties 99% of the time. She is intelligent: always curious, always watching, always learning, always doing things for herself. She is funny, creating games and laughing at her own antics. She gives big hugs and slobbery kisses (sometimes repeatedly). She loves animals and other children. She shares her toys and can engage anyone to play. She is healthy. She is happy. She is thriving.

But every once in a while, that pesky 1% of strife emerges. Despite our fortunes, we are imperfect humans in the midst of an arduous struggle for our child. We are fallible. We have weakness. We have limited emotional endurance. To show ourselves mercy means we cannot downplay how hard each day is. This battle to get her to walk is one she cannot fight alone. Despite resisting our help, we cannot leave her be. To do so would be to give up. To do so would be to resign her to a life of limited mobility. We cannot do that. We will not do that.

But tonight, I hit a wall. The disappointment of her lackluster reaction to her new toy (one I have been looking forward to for two days) mingled with the longstanding battle of working endless hours with her and a complete toddler breakdown was a toxic combination for my good sensibility. As her cheery new toy sat idle to the side, the three of us sat in a moment of surrender.

So as she now rests, and we sink into the comforting softness of the couch cushions, all tears have dried. All cries have muted. All struggles have ceased for tonight.

Tomorrow will be a new day. It is a fresh start to attempt the same work. It is a new chance to find smiles, giggles, our wavering sense of enthusiasm, and quite possibly a few more steps forward. Tomorrow we will hopefully keep the tears at bay and find our way forward again.

Tomorrow I will regain my cool, rebuild my resolve, and recapture my optimism. Just as Evelyn can pick herself up and continue on, so can I.