A Life of Purpose is Not a Life Free of Struggle

For many, 2020 was a year of confusion, loneliness, and struggle.

The Smith Household wasn’t much different in many ways, yet stood independent from the rest of the world’s experience.

At least it felt that way.

Truthfully, 2020 was even more impactful for me than any other member of our little clan, as I would become the life and full-time caregiver to one of our greatest gifts and challenges.

A conflict of both joy and pain, good and bad. The tension of life itself.

In the early morning hours on April 4th, 2020, Cosette Smith would enter the world after over 27 hours of labor. Oxygen flow will stop if the umbilical cord comes out before the baby. Our sweet little daughter wasn’t breathing for ten minutes in the womb. She still wasn’t once outside.

Resuscitation.

They didn’t know at first that immediate intervention was needed. Her Apgar scores were a little low but nothing terrible, so they sent her along to be with my husband and me.

But everything was not all right.

Her eyes would roll, and her body seized with every cry. She couldn’t suck or swallow, meaning she couldn’t eat. She’d rarely wake up, and if calm while awake, couldn’t lift her limps. She felt nothing, no pain, even with the sharpest jab.

NICU.

I’ve never cried so hard in my life.

I was sitting alone for hours on end in a dark NICU room. My husband was unable to be there because of COVID restrictions. All this while I was in excruciating pain from just having major surgery and unable to take pain meds for fear I’d make the hyper-lethargy worse by giving her narcotics through my breast milk.

I couldn’t hold or rock or comfort her in those early days of intensive care.

After a month in NICU, we were released following a surgery that inserted a gastric tube so she could at least have nutrition safely while at home. The months that followed were a blur. Not because they were quick but because it was as if we were in a time warp.

Each day brought a new set of challenges, but it wouldn’t be until she was six months old that she’d receive the formal diagnosis of Cerebral Palsy.

CP, very loosely put, is a lack of muscle control resulting from brain damage, which our little daughter sustained during the birthing process. The inability to suck and swallow can be one of the resulting damages, clinically known as “Dysphasia,” which would turn out to be The Greatest, Simultaneous Curse-Blessing of our journey thus far.

A curse because the most significant risk to her life was her saliva.

She choked…all…of…the…time. Turning purple from nearly every event, I’d desperately shake the life back into her. It was not a carefree existence.

A blessing, however, because of the path it put us on.

The one major red flag in the hospital was her inability to self-feed, which is what would lead us down a dark and confusing path from the very start. If she could not eat, the other issues with her development would get a higher priority. The higher the priority, the quicker the intervention. The quicker the intervention, the greater likelihood of living with relative freedom from the ramifications of that traumatic birth injury.

Ultimately though, our greatest goal for our daughter is not an existence free of the life-long battle that event has the potential to cause. Freedom from struggle is impossible for every person across the Earth’s surface. We all struggle in one way or another, no matter who we are. To wish for a life free of adversity is futile, even if it is a wish for those we love the most.

The future we desire for her is not an existence with “normal” developmental paths. Normal is a falsehood society peddles to make it easier to create desired outcomes for society, not individuals. Striving for the unattainable “normal” is a life pursuing unfulfillable hopes with an inevitable outcome of crushed spirits.

However, we do wish for her a life empowered by God’s purpose uniquely designed for her alone. It is a future filled with a drive that brings joy amid adversity and pain, not an existence devoid of meaning by pursuing comfort and normalcy.

Every person has a unique perspective that only they can offer the world. Sweet Cosette is stronger and more resilient because of her Cerebral Palsy. It is a part of her, though not the source of her identity.

Each person is powerful because his or her struggle often births the most beautiful purpose. That’s what my daughter(s) gave me. Purpose.

Beautiful - painful - - resilient - - - purpose.

What do I wish for you, the reader? The same thing as my precious little ones.

Live a life right where you are. Right through your struggles. Right through your pain. Allow it to birth something in you that can’t be undone.

Move mountains!